Wairarapa, Hutt Valley and Capital & Coast District Health Boards

PUBLIC CPHAC_DSAC Committee Papers 20 May 2016 - Cover

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Wairarapa, Hutt Valley and Capital & Coast District Health Boards Community & Public Health and Disability Support Advisory Committees

20 May 2016

Wairarapa, Hutt Valley and Capital & Coast District Health Boards

1 PUBLIC CPHAC_DSAC Committee Papers 20 May 2016 - Agenda

COMMUNITY & PUBLIC HEALTH AND DISABILITY SUPPORT ADVISORY COMMITTEES

Public Agenda

20 May 2016 9:00am Boardroom, Pilmuir House, Hutt Valley District Health Board, Lower Hutt

ITEM ACTION PRESENTER MIN TIME PG

1 PROCEDURAL BUSINESS 15 9.00 am 2 1.1 Karakia 1.2 Apologies RECORD N Leggett 1.3 Continuous Disclosure - Conflict of Interest ACCEPT N Leggett 3 1.4 Confirmation of Minutes 18 March 2016 APPROVE N Leggett 6 1.5 Matters Arising NOTE N Leggett 1.6 Action List NOTE N Leggett 12

2 FOR DISCUSSION 2.1 Director, SIDU Report NOTE S Williams 20 9.15 am 14 2.2 Update on Sub Regional Disability NOTE P Boyles 30 9.35 am 33 Implementation Plan 2.3 Equity Monitoring Indicators NOTE W Skipage 30 10.05 am 45 2.4 Health System Planning Update NOTE W Skipage 5 10.35 am 69 2.5 Regional Public Health Report NOTE S Williams 10 10.40 am 71 2.6 Manage My Health Presentation NOTE Compass PHO 30 10.50 am

OTHER 3 General Business 5 11.20 am 4 Resolution to Exclude the Public APPROVE N Leggett 5 11.25am 81 ADJOURN 11.35 am APPENDICES 2.1 Director, SIDU Report: ∑ Appendix 1: Privacy Impact Assessment, Compass Health – Patient Portal 82 ∑ Appendix 2: Shared Care Record 108 ∑ Appendix 3: Diabetes Services and Performance 177 2.2 Update on Sub Regional Disability Implementation Plan: ∑ Appendix 1: Disability Responsiveness Programme Reporting Framework 186 ∑ Appendix 2: New Zealand Sign Language (NZSL) Population Data Nationally and Sub Regionally for 191 CPHAC DSAC ∑ Appendix 3: Research Framework and Methodology Summary 194 ∑ Appendix 4: NZSL in Health Project Integration Diagram 196 ∑ Appendix 5: Sub Regional Forum 2016 Invitation 200 2.3 Equity Monitoring Indicators: ∑ Equity Monitoring Indicators 202 2.5 Regional Public Health Report: ∑ Regional Public Health: Regional Public Post Newsletter 214

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COMMUNITY & PUBLIC HEALTH AND DISABILITY SUPPORT ADVISORY COMMITTEES Conflicts & Declarations of Interest Register

MAY 2016

Name Interest Mr Nick Leggett ∑ Member, Capital & Coast District Health Board Chair ∑ Chair, 3DHB CPHAC/DSAC committee ∑ Member, CCDHB FRAC committee ∑ Member, 3DHB FRAC committee ∑ Member, HAC committee ∑ Board representative, Sub Regional Pacific Strategic Health Advisory Group ∑ Mayor, Porirua City Council ∑ Trustee, Spark Foundation ∑ Chairperson, Wellington Regional Emergency Management Committee, Greater Wellington Regional Council ∑ Member, Wellington Regional Transport Committee, Greater Wellington Regional Council ∑ Member, Wellington Water Committee Dr Virginia Hope ∑ Chair, Hutt Valley District Health Board Deputy Chair ∑ Chair, Capital & Coast District Health Board ∑ Chair, Wairarapa, Hutt Valley and CCDHB Hospital Advisory Committees ∑ Deputy Chair, Wairarapa, Hutt Valley and CCDHB Community Public Health Advisory Committee and Disability Support Advisory Committees ∑ Member, Hutt Valley District Health Board, Finance Risk & Audit Committee ∑ Member, Capital & Coast District Health Board, Finance Risk & Audit Committee ∑ Member, Wairarapa, Hutt Valley and CCDHB Finance Risk & Audit Committee ∑ Health Medical Director, Institute of Environmental Science & Research ∑ Director & Shareholder, Jacaranda Limited ∑ Fellow, Royal Australasian College of Medical Administration ∑ Fellow and New Zealand Committee Member, Australasian Faculty of Public Health Medicine ∑ Fellow, New Zealand College of Public Health Medicine ∑ Member, Territorial Forces Employer Support Council ∑ Member, CRISP Governance Board ∑ Member, Laboratory Round Table ∑ Brother and Sister work in Health Sector in the Wairarapa Disability Support and Laboratories Ms Janine Vollebregt ∑ DHB Nurse Educator for the UCOL Undergraduate Maori Students. This 0.4 FTE Member position is effective from 30 April 2008 to 30 June 2010. Mr Chris Laidlaw ∑ Member, Capital & Coast District Health Board Member ∑ Member, 3 DHB CPHAC/DSAC committee ∑ Chair, Natural Resource Planning Committee, Greater Wellington Regional Council ∑ Trustee, ANEW Foundation ∑ Trustee, Citizenship Education Trust Wairarapa, Hutt Valley and Capital & Coast District Health Boards

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Name Interest ∑ Advisory Board Member, Leadership New Zealand ∑ Board Member, NZ Foundation for Progress and Wellbeing ∑ Patron, Association of Blind Citizens of New Zealand ∑ Vice Chairman, Oxfam ∑ Chairman, Greater Wellington Regional Council ∑ Deputy Chairman, Wellington Water Committee ∑ Member Wellington Regional Strategy Committee Ms Helene Ritchie ∑ Councillor, Wellington City Council Member ∑ Registered Psychologist, Private Practice Committee, Capital & Coast District Health Board ∑ Member, Capital & Coast District Health Board ∑ Member, 3D Hospital Advisory Committee ∑ Son is a GP in Dunedin Ms Helen Kjestrup ∑ Works for Central TAS as an Auditor Member ∑ Shareholder, Property Investment Company – Kjestrup Properties ∑ Assessor for Royal College of GPs for Cornerstones Programme Mr David Choat ∑ Member, Capital & Coast District Health Board Member ∑ Member, Hospital Advisory Committee, Capital & Coast District Health Board ∑ Partner, Ms Fleur Fitzsimons, employed as Solicitor, New Zealand Public Service Association ∑ Chief Policy Analyst, Ministry of Education Ms Liz Falkner ∑ Salaried General Practitioner with Masterton Medical Limited Member ∑ General Medical Practice in which Doctor Falkner works is a member of the Wairarapa Community PHO. ∑ Medical Advisor – Post Polio Support Society NZ Inc Ms Sandra Greig ∑ Member Greater Wellington Regional Council Member ∑ Member of Woburn Probus (elderly issues) ∑ Cousin midwife in Napier ∑ Member HVDHB ∑ Chair of Hutt River Flood Management Group ∑ Member of Grey Power Mr Peter Douglas ∑ Chair, Capital & Coast District Health Board, Finance Risk & Audit Committee Deputy Chair ∑ Chair, Hato Paora College Board of Trustees ∑ Chair, Hato Paora College Proprietors Trust Board ∑ Member Hutt Valley District Health Board ∑ Member, Capital & Coast District Health Board ∑ Member, Wairarapa, Hutt Valley and CCDHB Finance Risk & Audit Committee ∑ Member, Hutt Valley District Health Board, Finance Risk & Audit Committee ∑ Member, Capital & Coast District Health Board, Finance Risk & Audit Committee ∑ Member, Wairarapa, Hutt Valley and CCDHB Community Public Health Advisory Committee and Disability Support Advisory Committees ∑ Director, Te Ohu Kaimoana Custodian Limited ∑ Director, Charisma Developments Limited ∑ Chief Executive, Te Ohu Kaimoana, Māori Fisheries Trust Ms Katy Austin ∑ Member Mr Wayne Guppy ∑ Chair, Hutt Valley District Health Board, Finance Risk & Audit Committee Member ∑ Deputy Chair, Hutt Valley District Health Board ∑ Member, Wairarapa, Hutt Valley and CCDHB Finance Risk & Audit Committee ∑ Member, Capital & Coast, Hutt Valley and Wairarapa DHBs Community Public Health Advisory Committee and Disability Support Advisory Committee ∑ Member, Capital & Coast District Health Board, Finance Risk & Audit Committee

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Name Interest ∑ Wife employed by various community pharmacies in the Hutt Valley ∑ Trustee - Orongomai Marae ∑ Upper Hutt City Council Mayor ∑ Director MedicAlert Ms Margaret Faulkner ∑ Nursing Advisory Committee, Whitireia Community Polytechnic Member ∑ Community organisations (such as Partners Porirua and the Cannons Creek Opportunity Centre) that may apply for DHB funding ∑ Member, Kapiti Aged Concern ∑ Member, Porirua Grey Power ∑ Co-chair, Sub Regional Disability Advisory Committee Dr Tristram Ingham ∑ Senior Research Fellow – University of Otago Wellington Member ∑ Board Member – Capital & Coast DHB Māori Partnership Board ∑ Director of Strategy – Asthma Foundation of New Zealand ∑ Board Member – Wellhealth Trust PHO ∑ Member – Wellington City Council Accessibility Advisory Group ∑ Member – Capital & Coast DHB Disability Action Group ∑ Member – 3DHB Sub-regional Disability Advisory Group ∑ Member – Capital Support Disability Consumer Group ∑ Member – Te Ohu Rata o Aotearoa (Maori Medical Practitioners Association) ∑ Member – Institute of Directors ∑ Member – Health Research Council College of Experts ∑ Member – European Respiratory Society ∑ Professional Member – Royal Society of New Zealand ∑ Director – Miramar Enterprises Limited (Property Investment Company) ∑ Daughter – Employee of Hutt Valley based Māori provider (Tu Kotahi Māori Asthma Trust) ∑ Wife – Research Fellow, University of Otago Wellington Fa’amatuainu Tino Pereira ∑ Chair of the Pacific Business Trust ∑ Member, National Pacific Advisory group, NZ Police

Ms Debbie Chin ∑ CEO, Capital & Coast District Health Board CCDHB Chief Executive Officer Dr Ashley Bloomfield ∑ Trustee, AR & EL Bloomfield Trusts HVDHB Chief Executive Officer ∑ Fellow, NZ College of Public Health Medicine ∑ Board Member, Action on Smoking and Health (ASH) ∑ Member, NZ College of Public Health Medicine, Finance, Risk & Audit Committee ∑ Sister is a nurse at Hutt Valley DHB Sandra Williams ∑ Director, Tupu Associates Limited Acting Director, Service, ∑ Director, Kahu Wear Limited Integration & Development Dr Pauline Boyles ∑ Immediate Past President / Advisor to Board, Wellington Riding for the Disabled Senior Disability Advisor ∑ Managing Director, Dream Achievers Ltd ∑ Member on the Ministry of Health National Advisory Group for Review of Behaviour Support Services

Capital & Coast, Hutt Valley & Wairarapa District Health Boards

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WAIRARAPA, HUTT VALLEY AND CAPITAL & COAST DISTRICT HEALTH BOARDS COMMUNITY PUBLIC HEALTH ADVISORY AND DISABILITY SUPPORT ADVISORY COMMITTEES DRAFT MINUTES

9.00am Friday, 18 March 2016 Board Room, Pilmuir House, Hutt Valley District Health Board

PRESENT: IN ATTENDANCE: Committee Management & Externals Nick Leggett (Chair) Debbie Chin (CEO, CCDHB) Derek Milne (Member) Dr Ashley Bloomfield (CEO, HVDHB) Virginia Hope (Deputy Chair) Adri Isbister (CEO, WRDHB) Katy Austin (Member) Sandra Williams (Acting-Director, SIDU) Wayne Guppy (Member) Dr Pauline Boyles (Senior Disability Advisor, SIDU) Dr Tristram Ingham (Member) Alison Mitchell (Well Health PHO) Tino Pereira (Member) Alison Hannah (SIDU) Leanne Southey (Member) Andrea Bright (Minute Secretary) Helene Ritchie (Member) – Phoned in @ 9.25am Chris Laidlaw (Member) Sandra Greig (Member) Margaret Faulkner (Member) Jane Hopkirk (Member)

Board Members Presenters Taima Fagaloa APOLOGIES: Wayne Guppy for lateness Committee Management

1.0 PROCEDURAL BUSINESS Committee member opened the meeting up with a karakia. 1.1 Apologies Sharon Cavanagh, Alan Shirley Moved: Nick Leggett Seconded: Derek Milne CARRIED

1.2 Conflicts of Interest: Two Committee Members requested their conflicts of interest be updated (Tristram Ingham and Tino Pereira. Action: Minute Secretary to update both Tristram Ingham and Tino Pereira’s conflicts of interest. 1.3 Confirmation of Minutes

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Committee member raised issues from the previous minutes which he would like clarification on: 1. Equity Review: It was requested that the Equity Indicator report include actions being undertaken to improve the equity indicator results. The Committees noted the minutes as read. Moved: Derek Milne Seconded: Virginia Hope CARRIED 1.4 Schedule of Action Points: Director SIDU provided an update on the following action points:

CEAG Update on the work programme for May 2016. Smoking Cessation Programme Update The Ministry of Health is retendering the smoking cessation contracts. Any iwi based programme will be incorporated into the Tobacco Control Plan when it is refreshed.. Work Force Training for the Home Care Sector This action was reported on in the Directors SIDU report.

Pacific Health Monitoring the actions around Pacific Health was covered in the agenda item Pacific Action Plan.

The action transferred from HAC H85 Director SIDU advised that this is scheduled in the work programme for November 2016.

Equity Both Maori and Pacific are scheduled in work programme.

NZ Health Strategy Director SIDU advised that invitations to the sessions run by the Ministry of Health had been sent out to Board members.

Annual Plan The action of workshops had been picked up by CEO’s. These were held in February and March. DISCUSSION PAPERS 2.1 Director, SIDU Report The Committee noted the proposed work programme:

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∑ Palliative Care Update ∑ Mental Health & Addiction Update including Suicide Prevention Plan Update SEPTEMBER ∑ Disability Plan Implementation Update ∑ Child Health & Youth Health (including Rheumatic Fever) ∑ HSP Update ∑ Alliance Leadership Team Update (Integration Achievements) ∑ Equity & Maori Health and Pacific Health Indicator End of Year Report NOVEMBER ∑ Disability Plan Implementation Update ∑ Annual Planning Process for 2017/18 ∑ Equity and Maori Health Indicators Quarter Report ∑ Population Health Programmes ∑ Health of Older Persons ∑ Draft HSP Report

Patient information and electronic records A number of questions were raised by Committee Members about access to patient information including what patients understood about the information in their records, what was available to those accessing that information, how the patient’s permission was sought and what communication was being done to patients. The PHO (Well Health) representative advised the committee about their process. She noted that it was a systematic roll out and that smart phones were one way people were accessing the information. Some members noted that smart phones are beyond many peoples income although there was high usage of these with younger people and also many in other age groups. Questions asked around what information can be assessed on line as there were concerns raised by Committee Member about the risk of Elder Abuse and families accessing information. Acute Demand Committee members noted that the communications sent out had an impact. Noting that there has been a increase though in ED (triage 3). It is important to maintain the message “what you go to your GP for” and “what you go to ED for”. A Wairarapa Committee member mentioned that there are not a lot of After Hours centers in the Wairarapa area, the GPs close at 5pm so therefore there is not a lot of choice but to attend ED. The Committee NOTED the contents of this report. Action: More information on patient information and electronic records will be made available at the May 2016 meeting.

Moved: Nick Leggett Seconded: Katy Austin CARRIED

1.1 Update on Sub Regional Disability Implementation Plan Dr Pauline Boyles updated the Committee. Handouts were distributed (these will be made available in the Resource Centre). The Biennial Sub regional Disability Forum 3 June 2016 was noted. Committee members noted the development of the Needs Assessment Service Coordination (NASC) guide which had generated interest form the Ministry of Health as a possible base for a national guide.

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Child and Adult Transition. There is work being done with families in the sub region and the draft of an electronic health pathway is ready for review. Once the review process is completed there will be a roll out programme to support its use across the sub region. Action: CPHAC DSAC committee asked to see the guide once the consultation on the NASC guide is completed. Action: Circulate the date of the sub regional Disability Forum to all CPHAC/DSAC members. The Committee NOTED the contents of this report: 1. Progress against the five year plan; 2. Sub Regional Forum June 3 is to be opened by Associate Minister of Health and Disability Issues; 3. A draft of the first ever electronic health pathway for children with chronic health and disability in transition has been completed and is attracting national interest; 4. RNZCGP has agreed to work in an improving clinical effectiveness module with Primary Care (Improving Health Outcomes Working Group); 5. NZ Health Strategy: submissions by SRDAG and the MOH working Group to ensure the health of people with disabilities is addressed; and 6. NZ Disability Strategy is also under review.

Moved: Nick Leggett Seconded: Katy Austin CARRIED

2.3 Pacific Action Plan The Director, Pacific Health CCDHB presented the Plan to the Committee. Committee members commended the efforts put into the plan. The Committee NOTED the report and the Draft Capital & Coast District Health Board Pacific Plan 2017- 2020.

Moved: Tino Pereira Seconded: Tristram Ingham CARRIED

2.4 Obesity Stocktake Director SIDU updated Committee. It was noted that there is an interest in working with Councils and other bodies to move this piece of work forward. A lot of things happening in the community in this area eg Kokiri Marae Health Promotion are pushing healthy eating, drinking and being active in sports and are looking for a partnership. Committee Member asked if the data was robust and what the quality of the data was. The CE, Hutt Valley DHB advised the committee that he was confident that the data presented was accurate. The CE, Hutt Valley DHB noted that he had joined the Steering Group for Healthy Families Lower Hutt and expected to see more progress in the next few months and will report on progress at the next CPHAC DSAC meeting. ACTION: CE, Hutt Valley DHB to report back on progress made by Health Families Lower Hutt at the next meeting. Committee Members identified other initiative such as Wilford School which has a programme in the school which is working well and how we might leverage these types of initiatives and especially how Regional Public Health could work with schools and councils. A Committee Member noted the celebration of 10,000 homes being insulated and heated. An thought that a similar strategy could be used with child obesity. Wairarapa, Hutt Valley and Capital & Coast District Health Boards DRAFT March 2016

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It was identified that the three key groups to work on obesity together were Schools, Health and Local councils (including the Regional Council). It was identified that Regional Public Health has a very significant role in prevention, education, and coordination across the sub region. The Committee: ∑ Noted the report; ∑ Noted that reducing childhood obesity is being a priority area; ∑ Noted the six key recommendations of the ECHO report to reverse the rising trend of childhood obesity: ∑ promote intake of healthy foods; ∑ promote physical activity; ∑ preconception and pregnancy care; ∑ early childhood diet and physical activity; ∑ health, nutrition and physical activity for school-age children; and ∑ weight management. ∑ Noted the three key focus areas in the New Zealand Childhood Obesity Plan ∑ targeted interventions for those who are obese; ∑ increased support for those at risk of becoming obese; and ∑ broad approaches to make healthier choices easier for all New Zealanders. ∑ Noted the new health target will be implemented from 1 July 2016: ‘By December 2017, 95% of obese children identified in the Before School Check (B4SC) programme will be referred to a health professional for clinical assessment and family based nutrition, activity and lifestyle interventions’; and ∑ Noted that management will work towards aligning Health Promotion funding and annual planning across the sub-region in order to reduce duplication and support the recommendations of this document.

The Committee was silent on the following recommendations: ∑ Consider the continued expansion of Project Energize, across the 3DHBs as resources become available ∑ Consider the procurement of referral options to support the B4SC Health Target such as; ∑ Active Families Preschool programme; ∑ Maternal Green Prescription programme; ∑ Referral options for nutritional support; and ∑ Consider further the implementation of the no cost/low cost recommendations (Table three).

Moved: Helen Ritchie Seconded: Margaret Faulkner CARRIED

4.0 RESOLUTION TO EXCLUDE THE PUBLIC It is recommended that the Community & Public Health and Disability Advisory Services Committees: (a) Agree that as provided by Clause 32(a), of Schedule 3 of the New Zealand Public Health and Disability Act 2000, the public are excluded from the meeting for the following reasons:

Subject Reason Reference* Public Excluded Minutes For the reasons set out in the respective public excluded papers Public Excluded Matters Arising from For the reasons set out in respective public excluded papers previous Public Excluded meeting Refresh of the Greater Wellington Papers contain information and advice that is likely to 9(2)(i)(j) Sub-regional Rheumatic Fever prejudice or disadvantage commercial activities and/or Prevention Plan disadvantage negotiations

* Official Information Act 1982.

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Moved: Nick Leggett Seconded: Derek Milne CARRIED The meeting concluded at 11.20am CONFIRMED that these minutes constitute a true and correct record of the proceedings of the meeting. DATED this day of 2015

Nick Leggett CHAIR

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SCHEDULE OF ACTION POINTS - PUBLIC CPHAC-DSAC COMMITTEES AP No: Topic: Action: Responsible: How Dealt With: Delivery Date: Ex CPHAC-DSAC Public Meeting 20 March 2015 2.1 Echocardiography Echo Paper to be submitted to the Capital & Coast Director, SIDU Completed 13/5/16 May Board 2016 Screening for Rheumatic Board Workshop in May. Workshop Heart Disease Further updates to be provided to the Committee Director, SIDU July 2016 Ex CPHAC-DSAC Public Meeting 17 July 2015 2.0 Hazel Irvine, CEAG Chair CEAG to seek assistance with linking their website CEAG Report back July 2016 with the 3DHB websites.

The CEAG Committee will report back every 6 months on the priorities of CEAG, key outcomes and progress.

4.0 General Business H85 – transferred from Hospital Advisory Committee Director, SIDU On work programme November 2016 The committee requested that more focus is required on Aged Care in the community and where this fits within the Board / Sub Committee / s responsibilities i.e. a Community Provider Committee. Ex CPHAC-DSAC Public Meeting 20 November 2015 1.2 Conflicts of Interest Action: Conflicts of interest register to be updated Secretariat Requested from members Completed 1.3 Confirmation of Minutes Actions: 1. Equity indicators will be reviewed annually. Director, SIDU On May agenda May 2016

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AP No: Topic: Action: Responsible: How Dealt With: Delivery Date:

2. Development of a Maori paper similar to the May/July meeting May/July 2016 Pacific paper. 2.4 Director, SIDU Report ALTs – Electronic Record Access Rules May 2016 Action: Report back on what process in place to On May agenda Director, SIDU ensure appropriate controls around patient information access through shared care records.

Ex CPHAC-DSAC Public Meeting 18 March 2016 2.1 Director, SIDU Report Patient Information and electronic records May 2016

Action: More information on patient information and Director, SIDU On May agenda electronic records will be made available at the May 2016 meeting. 2.2 Update on Sub Regional Action: CPHAC DSAC committee asked to see the guide May 2016 Disability Implementation once the consultation on the NASC guide is completed. Senior Advisor, Plan Disability Responsiveness Action: Circulate the date of the sub regional Disability Completed Forum to all CPHAC/DSAC members.

2.4 Obesity Stocktake Action: CE, Hutt Valley DHB to report back on progress CE, HVDHB July 2016 made by Health Families Lower Hutt at the next meeting.

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DISCUSSION PAPER

Date: 19 May 2016

Author Sandra Williams, Acting Director of Service Integration and Development

Endorsed by Debbie Chin, Chief Executive, Capital & Coast DHB Ashley Bloomfield, Chief Executive, Hutt Valley DHB Adri Isbister, Chief Executive, Wairarapa DHB

Subject SIDU DIRECTOR’S REPORT

RECOMMENDATION

It is recommended that the Committees: a. Note the contents of this report.

APPENDICES:

1: PRIVACY IMPACT ASSESSMENT, COMPASS HEALTH – PATIENT PORTAL

2: PRIVACY IMPACT ASSESSMENT- SHARED CARE RECORD

3: DIABETES SERVICES AND PERFORMANCE

1. PURPOSE The purpose of this paper is to update the Committees on key work not covered elsewhere in the agenda.

2. ALLIANCE LEADERSHIP TEAM UPDATES ON INTEGRATION ACTIVITIES The DHB and PHOs are collaborating on a range of activities to ensure better care for patients. Below are the highlights from the sub-regional and the local integration work.

On 9 May 2016 Minister Coleman released information in support of patient portals: ∑ Health Minister Jonathan Coleman is encouraging people to use a new online map to see whether their GP offers a patient portal. ∑ “A growing number of general practices are introducing patient portals. These secure online sites are the health equivalent to online banking,” says Dr Coleman. ∑ “Portals enable patients to book appointments, order repeat prescriptions and view lab test results online. ∑ “You can have secure conversations with your GP via email, and in some cases, patients can also view their notes online. ∑ “Portals are convenient, secure and real time savers for both the patient and staff at their general practice.

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PUBLIC ∑ “A new interactive map launched today makes it easy for patients to check which general practices are offering portals. Patient portals are a great step towards enabling New Zealanders to manage more of their own healthcare.” ∑ Over 330 general practices are now offering patient portals, with nearly 136,000 New Zealanders registered to use one. ∑ Last year Dr Coleman approved a $3 million funding boost to give more New Zealanders access to patient portals, which included $500,000 for an awareness campaign. ∑ The second phase of the awareness campaign starts today and runs to mid-June on print, radio and online. ∑ The new map is on the patient portal website, www.patientportals.co.nz. You can search by either typing in the name of your general practice, or zoom into your region to see which practices have portals.

2.1 Sub Regional Work stream highlights ∑ The draft 3 DHB self-management support framework has been finalised. ∑ The health navigator website has been selected as a solution for the sub-region for health/patient information website. o The website is accessible to public and aiming to support people understanding their own health and empower them to manage their own health management. o There is evidence that putting trustworthy health information at consumers fingertips will make for better informed patients who are willing and able to take on more of the responsibility for their own health and wellness o The health navigator website improves accessibility of reliable self-care/self-help information to support decision making, autonomy, and self-determination and encourage patient activation and sharing of responsibility in ongoing health care. ∑ One hundred and ninety health pathways have been localised and developed. ∑ The pathways that went live over the past two months included Malignant Spinal Cord Compression, Warfarin and Surgery, New Oral Anticoagulants, Zika Virus, Local Radiology Options; IV Iron Infusion. o The first health pathways subscriber update for 2016 was circulated to 597 subscribers on 29 January. ∑ The shared care record and patient portal is now available across the three DHBs. The following table provides information on the current uptake across the sub region:

Measurement CCDHB HVDHB WDHB Shared Care Record % of patients within Primary Care Practices that have enabled the SCR 88.13% 87.14% 95.56% Number of patients who have opted out 157 132 25 Patient Portal # of primary care practices that have enabled the Patient Portal 30 9 5

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59.25% 47.46% 88.14% % of patients able to access the Patient portal (in 10,073 3,201 1,402 practices that have this Patients Patients Patients service enabled) 3.53% 2.36% Population Population 3.32%

∑ A video on the patient portal is accessible at http://www.compasshealth.org.nz/healthcareonline ∑ The privacy impact assessments for the shared care records and the patient portal are attached as appendixes 1 and 2. ∑ The Shared Care Plan prototype has been provided by the vendor for testing in pilot sites.

2.2 CCDHB Integrated Care Collaborative

Workstream highlights ∑ The nine selected Health Care Home (HCH) practices have all signed the Memoranda of Agreement, and are now progressing through the assessment phase. ∑ The HCH Community Service Integration project completed seven workshops to review the current state and plan the future state. This is being developed into a model for ELT and ICC endorsement in June. ∑ The HCH model has been presented at the HINZ Conference Primer, the Sub-regional Pacific Strategic Group, the ORA Service Meeting and to the Kenepuru District Nursing Team. ∑ Twenty seven CCDHB practices setup, 7607 patients activated to access the portal ∑ A draft business case for Primary Care Access for Concerto has been completed ∑ A report compiling feedback on the diabetes case collaboration from primary care and the specialist services has shown positive feedback on the model. ∑ A successful Advanced Care Planning (ACP) ‘Conversations that Count’ day has been completed. ∑ Two hundred and sixty seven treatments have been provided through the Primary Options for Acute Care (POAC) by CCDHB practices (Mar 2015 – Mar 2016).

Demand on the CCDHB system ∑ The emergency department (ED) rate for CCDHB remains lower than the national average, however there are significant concerns with the rate of increase in ED presentations and the subsequent pressures on the hospital capacity. Apart from this being a concern in terms of the health of the population, this is challenging the sustainability of the system. The impact on ED and admissions are considered an outcome measure of the overall systems performance.

∑ In addition to the pressure that is being experienced in ED and within the hospital the impact of the increased health needs of the population is being seen in primary care. As an example, the following graphs depict this increased pressure for the Compass Health PHO population (Compass PHO covers 80 per cent of the CCDHB population).

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∑ For the Compass Health PHO population, the following is a summary of the population’s actual admission rates, relative to their predicted risk of admission (as per the Saphere risk

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PUBLIC prediction tool). This may provide an indication of which patients may be able to be supported proactively to reduce the potential for admission.

∑ Of those that are admitted there is a wide variation in length of stay (LOS). This also may give an indication of patients who may be able to be supported differently across the system.

Compass Health Capital & Coast % of Acute Admissions by Length of Stay 30% 20% 10% 0% 0 2 4 6 8 10 12 14 16 18 20 Length of Stay

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PUBLIC ICC programme across the patient journey ∑ To manage the demand across the system, developments are required across the patient journey. These are: o to prevent conditions from developing (e.g. smoking cessation, obesity) o to proactively manage conditions and multi morbidity (e.g. case collaboration) to prevent the acute episodes and reduce further complications o to provide efficient acute care ∑ To date most of the focus in the ICC ALT programme has been in the proactive/planned phase of the patient journey, and others are focused on acute services.

Preventative Proactive/Planned Acute

∑ The draft diagram below depicts the area of the journey focus for some of the key ICC Programme Projects. They have been colour coded to give some indication of their potential timing of impact on increasing capacity within the system to provide care for the population (green 1-2yr; orange 2-5y; red >5yr). NB: projects in development are shown in italics.

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2.3 Tihei Wairarapa Alliance Update

Work stream highlights ∑ During the quarter the Wairarapa and Hutt Valley DHB CEs agreed to change the Alliance Leadership Team (ALT) structure. The ALT will now meet quarterly providing strategic direction and monitoring of work programme. An Alliance Executive Team (AET) has been established that will meet monthly and drive the implementation of the work programme. ∑ All seven Wairarapa general practices have completed youth alcohol and drug brief intervention training. ∑ Youth Kinex – one-off AOD funding is available to fund expansion of the clinical services to young people via Youth Kinex for 12 months. ∑ A new model of care has been implemented for the School Based Health Services. The new service model has integrated the school nurse and home; education; eating; activities; drugs and alcohol; suicide and depression; sexuality and safety assessment (HEADDSSS) assessor roles to reduce isolation. The change enables staff to have a more regular presence in a smaller number of education facilities each so that they can become a bigger part of the school teams. As part of this model of care change the service will now deliver a health education programme to students at the alternative education facility in addition to HEADDSSS assessments. ∑ An initial Urgent Care Clinic business case has been developed. ∑ Acute Care Communication implementation plan has been developed. ∑ Phase one of primary and community integration project was launched at Carterton Medical on 26 April 2016. ∑ Total Wairarapa DHB number of patients activated for a patient portal up from 1131 to 1402. ∑ There are now 622 subscribers to HealthPathways. ∑ Masterton Medical Ltd has agreed to be a Tier Two Advance Care Plan (ACP) provider. ∑ A process to address the high 0-4 ASH rates in the Wairarapa has been agreed by the general practices in collaboration with the Whaiora Pae Ora service. The process includes workforce development in the area of skin infection and respiratory conditions, group whanau education sessions and active monitoring and follows up by the child’s general practice. ∑ The first of the whanau education sessions focused on skin infections was attended by six of the 12 whanau invited, and some health providers to understand how the sessions work. ∑ There have been 64 cellulitis and 46 DVT cases treated in primary care. ∑ A total of 11 procedures have been completed between Nov 15-March 16 in primary health care.

2.4 Hutt INC Alliance

Work stream highlights ∑ The implementation of the childhood asthma quality improvement programme throughout all general practices in the Hutt Valley continues utilising the revised health pathways, practice specific performance data and targeted work with high priority practices to facilitate quality improvement. ∑ The respiratory patient journey project is progressing on track with a full evaluation paper for consultation expected in June. ∑ Ongoing development and implementation of the integrated winter plan. Key winter planning activities are being advanced collaboratively between primary and secondary

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care. A range of these are on track for implementation prior to winter and some have been identified as longer term acute demand programmes of work that will be advanced for 17/18. ∑ The sub-regional Self-Management Support Framework was approved by Hutt INC and work has been approved to embed this framework and strengthen the self-management support services available for people with Long Term Conditions (LTC) in our sub-region. ∑ Hutt INC endorsed the establishment of the Diabetes clinical network to advance service improvements and provide clinical oversight to diabetes outcomes in the Hutt Valley. ∑ The community integration project continues to develop. The project is looking to expand the pilot to provide community health services across three community settings. ∑ Ongoing implementation of the LTC programme and primary care sustainability work within Te Awakairangi Health Network. ∑ Work is in the planning phase to improve primary and secondary care clinical integration in the Hutt Valley. Models of care will be piloted within services and will utilise the Information Management Service Level Alliance (IMSLA) enablers such as e-referral for specialist advice and the shared care record tool. ∑ Hutt Inc is also working to refine the strategic plan and long terms goals for integration in the Hutt Valley health system. This will utilise the work from health system plan with a workshop scheduled for June. ∑ Shared electronic health record: seven HVDHB practices set up and 1814 patients activated to access the patient portal.

3 HOME AND COMMUNITY SUPPORT SERVICES ∑ The Hutt Valley DHB, on behalf of the Hutt Valley and Capital & Coast DHBs, has now signed a letter of intent with Access Homehealth (Access) for the delivery of Home and Community Support Services (HCSS) to people over 65 years of age from 1 September 2016. ∑ An HCSS transition committee has been established that meets fortnightly, with representation of senior DHB staff, the chief executive of Access, the general manager of NASC and the two union representatives. This committee has oversight for the implementation of the detailed transition milestones required in the agreement with Access for the successful implementation of the new service by 1 September 2016. ∑ A meeting of the exiting providers has also been held with Access, NASC and the unions, and there is a strong level of agreement for how the three organisations will work together to support both staff and clients through the transition. The same communication will be going to all staff and clients via Access, and the Unions and exiting providers have been fully involved in drafting these communications. At this stage, we are pleased with progress and the level of collaboration between the three providers. ∑ A range of key stakeholders across the two DHBs have also been informed and a number of meetings will be held with consumer groups (particularly in the Kapiti region) who expressed interest in knowing more about the transition.

4 PALLIATIVE CARE ∑ The development of a 3DHB Strategic Plan for palliative care is well underway. ∑ The project team has been interviewing key stakeholders and partners to help identify and develop strategic goals for palliative care across the three DHBs. The team has also undertaken four forums with carers/consumers to inform strategic direction, a total of 33 groups of consumers/carers provided input. A comprehensive stocktake of services is also being developed. This sub-regional plan for palliative care will set out the agreed goals of the system and describe an integrated model of care where hospice, primary

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care and specialist palliative care services work together to achieve the strategic goals. The first draft will be completed mid May. The Project Team is also overseeing the implementation of the new hospice funding initiatives.

5 LABORATORY SERVICES

∑ On 1 November 2015 Wellington SCL (WSCL) commenced their contract for laboratory services in the three DHB (CCDHB, HVDHB, WDHB) region. Physically a new laboratory and associated services had been put together during the six months from the signing of the contract and the start of the service. WSCL now has its large new base laboratory on the Wellington hospital campus along with smaller laboratories in the associated hospitals (Hutt, Masterton, Kenepuru). ∑ WSCL has two major projects to complete this year; the completion of the refit of another laboratory floor in Wellington hospital and the change to their Ultra laboratory information system. As well as these activities they are meeting the majority of their KPIs with some turn-around times (e.g. hospital histology reporting), being better than what was in place previously. ∑ They were successfully assessed by IANZ last December and the summary from IANZ is probably the best independent assessment of what WSCL has achieved: “The WSCL leadership team has successfully executed the first phase of one of the biggest organisational and service transitions of medical testing laboratories in New Zealand. The speed with which the service has settled into steady state competence, quality and reliability was highly impressive and a testament to the hard work and commitment of all staff members of the organisation.

… Healthscope, WSCL leaders and their staff are highly commended and congratulated for their achievement in successfully introducing this new medical testing laboratory service model to the Wellington region.”

6 DIABETES SERVICES

There is a well-developed plan to prevent and manage diabetes across the sub-region, to increase integration and to improve performance, and outcomes for the population. This plan crosses the life span, from childhood, pregnant women through to adults, and the elderly.

This plan includes the following elements:

∑ Diabetes Care Improvement Plan (DCIP) ∑ Long term condition integration work ∑ Integration with prevention initiatives ∑ Podiatry and retinal screening services ∑ See appendix 3 for full report on diabetes.

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7 CPHAC/DSAC WORK PROGRAMME (REVISED) The revised programme for the year is set out below:

MARCH ∑ Disability Plan Implementation Update ∑ Refugee Health ∑ Obesity Prevention ∑ Service Integration – PHOs invited to discuss integration sections of Annual Plan MAY ∑ Disability Plan Implementation Update ∑ Equity & Maori Health Indicators Quarter Report/Equity Indicators Review ∑ PHO Updates including targets and IPIF ∑ Health System Plan (HSP) Update ∑ Population Health Update JULY ∑ Disability Plan Implementation Update ∑ Palliative Care Update ∑ Draft HSP Report ∑ Maori Health Report II SEPTEMBER ∑ Disability Plan Implementation Update ∑ Equity & Maori Health and Pacific Health Indicator End of Year Report ∑ Child Health & Youth Health (including Rheumatic Fever) ∑ HSP update ∑ Mental Health & Addiction Update including Suicide Prevention Plan Update

NOVEMBER ∑ Disability Plan Implementation Update ∑ Annual Planning Process for 2017/18 ∑ Population Health Programmes ∑ Health of Older Persons ∑ Alliance Leadership Team Update (Integration Achievements)

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8 FINANCIALS 8.1 WAIRARAPA DHB SUMMARY Financial Statement of Performance

Month Wairarapa DHB Year to Date Annual Variance Funder Result Variance Variance

Forecast vs Mar-16 Actual vs Actual vs Actual vs Actual vs Year End Annual Last year Annual Forecast vs Actual Budget Last year Budget Last year Actual Budget Last year Budget Last year Forecast Budget Actual Budget Last year

10,637 10,637 10,151 (0) 486 Base Funding 95,734 95,737 91,359 (3) 4,375 127,925 127,925 121,812 0 6,112 518 453 597 66 (79) Other MOH Revenue 4,436 3,887 4,713 549 (277) 5,864 5,223 6,318 641 (454) 11 10 (20) 0 30 Other Revenue 144 93 409 50 (266) 174 124 401 50 (226) 274 276 279 (3) (5) IDF Inflows 2,472 2,486 2,523 (14) (51) 3,315 3,315 3,343 0 (29) 11,440 11,377 11,008 63 432 Total Revenue 102,786 102,203 99,005 583 3,781 137,278 136,587 131,874 691 5,403

222 222 217 0 (6) DHB Governance & Administration 2,002 2,002 1,950 0 (52) 2,669 2,669 2,600 0 (69) 4,438 4,422 4,399 (16) (39) DHB Provider Arm 39,982 39,815 39,626 (167) (356) 53,254 53,087 52,834 (167) (419) External Provider Payments: 0 880 941 909 61 30 - Pharmaceuticals 8,106 8,605 8,640 499 534 10,971 11,486 11,267 515 296 6 266 317 260 312 - Laboratory 1,325 2,591 2,803 1,266 1,477 1,325 3,389 3,771 2,063 2,446 740 727 600 (12) (140) - Capitation 6,334 6,143 5,952 (190) (382) 8,480 8,201 8,250 (279) (230) 557 541 555 (16) (2) - ARC-Rest Home Level 4,872 4,803 4,562 (69) (311) 6,364 6,393 6,189 28 (175) 461 448 419 (13) (43) - ARC-Hospital Level 4,061 3,978 3,949 (82) (111) 5,556 5,295 5,181 (261) (374) 311 291 311 (19) 0 - Other HoP 2,465 2,634 2,529 169 64 3,342 3,511 3,423 169 81 291 295 273 3 (18) - Mental Health 2,664 2,810 2,773 146 109 3,548 3,694 3,669 146 121 0 (17) (14) (17) (14) - Savings Plan 0 (150) (61) (150) (61) 0 (200) 0 (200) 0 387 423 323 36 (64) - Other 2,944 3,026 3,104 82 161 4,033 4,091 3,782 58 (251) 2,245 2,573 2,783 327 538 IDF Outflows 23,773 23,154 22,912 (619) (861) 30,904 30,872 29,819 (32) (1,085) 255 0 0 (255) (255) - Hutt DHB - Lab Contract 1,281 0 0 (1,281) (1,281) 2,046 0 0 (2,046) (2,046) 0 38 0 38 0 - Provision for IDF Wash-ups 0 344 0 344 0 1,255 458 0 (797) (1,255) 10,793 11,171 11,092 378 298 Total Expenditure 99,810 99,756 98,739 (54) (1,070) 133,747 132,944 130,787 (803) (2,961) 647 206 (84) 441 730 Net Result 2,977 2,448 266 529 2,711 3,530 3,642 1,088 (112) 2,443 Overall the result for Wairarapa DHB for the month of March is $441k favourable and $529k favourable for the year to date. Revenue Other MOH revenue is $66k favourable for the month and $549k year to date due to: ∑ The variance for the month is made up of $34k for ‘In Between Travel (IBT)’, $9k additional electives revenue, $31k relating to the funding for Free Under 13s services, $12k additional funding for Hospice community palliative care, and ($20k) other minor variances. ∑ The year to date variance of $549k is made up of $284k relating to the funding for free under 13s services, $109k additional funding for Hospice community palliative care, $78k of additional electives revenue for 2015/16 and $20k for 2014/15, $38k of additional Care Plus revenue, $34k of IBT revenue and ($14k) relating to other small variances.

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Expenditure ∑ Provider arm payments are ($16k) adverse for the month and ($167k) year to date due to: o A monthly adjustment of ($9k) relating to additional palliative care funding from the Ministry brings the year to date adjustment to ($87k). o A monthly adjustment of ($9k) for additional electives revenue brings the year to date total to ($78k) and $3k relating to the GP liaison position brings the year to date adjustment to $21k. o The balance is an adjustment for AnteNatal HIV screening as the Ministry has discontinued the funding for this service. ∑ External provider payments o Pharmaceuticals expenses are $61k favourable for the month because of $21k of additional rebates for 2015/16 and $40k from lower than budgeted claims. o The variance for the year to date is $499k favourable because of $82k 2014/15 additional Pharmac rebates, $186k of 2016/16 additional rebates, $57k from GST for rebates, and $174k from lower than budgeted claims. o Laboratory costs are $260k favourable for the month and $1,266k year to date because of the new contract costs now being included as IDF outflows as Hutt DHB is the lead DHB. o Capitation expenses are ($12k) adverse for the month and ($190k) year to date relating to free under 13’s and other funded programmes. o Aged residential care costs are a net ($151k) adverse for the year to date (rest home and hospital level) because of higher volumes of clients receiving rest home level care. o Other Health of Older People (HOP) costs are $169k favourable because of lower than expected costs for home based support services and recoveries from Focus. ∑ Mental health savings of $3k has been recognised this month and $146k year to date which relate to savings achieved in 2014/15 and 2015/16 on a reallocation of funding between providers. ∑ The savings line shows ($17k) adverse for the month and ($150k) for the year to date because savings have been recognised against other lines. ∑ Other costs are $82k favourable for the year to date and this is because of some savings being realised on a Maori health services contract and some costs now recognised as IDF outflows. ∑ Overall IDF outflows are $72k favourable for the month against a budgeted wash-up of $38k, and ($1,900k) year to date against a budget provision of $344k. The year to date result includes total wash-ups of ($651k) including ($492k) for inpatient volumes (February ($824k)), ($170k) for outpatient volumes (February ($169k)), and $10k for Pharmaceutical cancer treatments (PCTs) (February $16k). The remainder of the IDF outflows includes ($1,281k) relating to the lab contract and other IDF changes of $32k.

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8.2 HUTT VALLEY DHB SUMMARY Financial Statement of Performance

Month Hutt Valley DHB Year to Date Annual Variance Funder Result Variance Variance Forecast vs Actual vs Actual vs Mar-16 Actual vs Actual vs Year End Annual Last Year Annual Forecast vs Actual Budget Last year Budget Last year Actual Budget Last year Budget Last year Forecast Budget Actual Budget Last year

30,745 30,745 29,543 (0) 1,202 Base Funding 271,909 271,909 265,909 (0) 6,000 363,453 363,453 354,545 0 8,908 1,445 1,248 1,604 197 (159) Other MOH Revenue 15,030 13,616 14,630 1,415 401 18,894 17,212 19,829 1,682 (935) 28 10 30 18 (2) Other Revenue 472 90 478 382 (6) 502 120 624 382 (121) 6,043 5,962 5,690 81 353 IDF Inflows 53,839 53,663 50,520 176 3,318 71,725 71,549 67,594 176 4,130 1,460 0 0 1,460 0 - Lab Contract Change 7,372 0 0 7,372 0 11,753 0 0 11,753 0 39,722 37,966 36,868 1,756 1,394 Total Revenue 348,622 339,278 331,536 9,344 9,714 466,326 452,334 442,592 13,993 11,982

263 263 263 0 0 DHB Governance & Administration 2,363 2,363 2,363 0 0 3,151 3,151 3,151 0 0 16,388 16,231 16,532 (157) 144 DHB Provider Arm 143,870 143,071 142,218 (799) (1,652) 192,047 191,248 189,760 (799) (2,287) External Provider Payments: 2,624 2,929 2,824 305 201 - Pharmaceuticals 25,835 27,015 27,115 1,180 1,279 34,740 36,067 35,464 1,327 724 3,734 2,222 2,253 (1,512) (1,481) - Laboratory 27,592 19,995 19,810 (7,596) (7,782) 38,811 26,660 26,666 (12,151) (12,145) 2,015 2,002 1,828 (12) (186) - Capitation 17,251 16,861 16,493 (389) (758) 22,874 22,492 22,119 (382) (755) 1,048 926 892 (123) (156) - ARC-Rest Home Level 8,878 8,183 7,917 (694) (960) 11,825 10,901 10,629 (924) (1,196) 1,577 1,748 1,682 172 105 - ARC-Hospital Level 14,066 15,452 15,399 1,386 1,333 18,789 20,584 20,338 1,795 1,549 965 916 1,039 (49) 74 - Other HoP 8,496 7,931 8,144 (565) (352) 11,317 10,722 10,787 (595) (530) 828 928 819 100 (9) - Mental Health 8,353 8,696 7,738 342 (615) 11,137 11,479 10,104 342 (1,033) 690 697 657 7 (34) - Palliative Care / Fertility / Comm Radiology 6,293 6,272 5,963 (21) (329) 8,363 8,363 7,933 0 (430) 0 (147) 0 (147) 0 - Savings Plan 0 (1,325) 0 (1,325) 0 0 (1,767) 0 (1,767) 0 1,242 1,286 1,066 44 (176) - Other 9,137 9,741 9,257 604 121 12,494 13,127 12,902 633 408 0 0 0 0 0 - IDF Wash-ups - Prior Year 160 0 0 (160) (160) 160 0 0 (160) (160) 7,547 7,182 6,546 (365) (1,001) IDF Outflows 66,089 64,642 62,225 (1,447) (3,864) 88,125 86,190 83,454 (1,935) (4,671) 0 89 0 89 0 - Provision for IDF Wash-ups 0 797 0 797 0 0 1,063 0 1,063 0 38,919 37,271 36,400 (1,648) (2,520) Total Expenditure 338,383 329,696 324,643 (8,687) (13,740) 453,833 440,279 433,307 (13,554) (20,526) 803 694 468 109 (335) Net Result 10,239 9,582 6,893 657 (3,346) 12,493 12,055 9,284 439 3,209

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Overall, the result for Hutt Valley DHB for the month of March is $109k and $657k favourable year to date. The main reasons for the variances are:

Revenue ∑ Other MOH revenue is $197k favourable for the month and $1,415k year to date. ∑ This variance for the month is made up of $24k additional electives revenue for the month, $65k relating to under 13s services, $50k from the National Health IT Board for a 2014/15 contract; revenue for IBT of $76k and other minor variances of ($18k). ∑ The year to date variance is made up of $801k funding relating to under 13s services, $115k from a new MOH youth health services contract, $70k for the national patient flow project, $54 for the Maternity Quality and Safety programme, $40k of 2014/15 additional electives funding, $215k 2015/16 additional electives funding, $50k from the National Health IT Board for a 2014/15 contract and revenue for IBT of $76k. ∑ Other revenue variance of $18k for the month relates to recoveries from the Starship Foundation which are received quarterly and year to date $163k. $218k is for the PHO contribution for overnight primary care provided by Emergency Department. ∑ IDF Inflows are $1,541k favourable in the month which includes a movement of $141k in the month for wash-ups recognised with the Provider Arm, $1,460k relating to the change in lab contracts and ($60k) relating to other changes. ∑ Year to date IDF Inflows are $7,548k favourable which includes $384k for wash-ups recognised with the provider arm, $7,372k relating to the laboratory contract change and ($208k) relating to other changes.

Expenditure ∑ Provider arm payments are ($157k) adverse for the month and ($799k) year to date. This includes ($141k) adverse for the month and ($384k) year to date from IDF Inflows wash-ups. A monthly adjustment of $8k with Wairarapa DHB for general surgery CWDs bringing the year to date total to $71k. ∑ A monthly adjustment of ($24k) for additional electives funding bringing the year to date total to ($215k). In previous months there have been one-off adjustments of: ($54k) relating to the Maternity quality and safety programme, ($70k) national patient flow funding, ($64k) for cancer related multidisciplinary meetings, ($15k) relating to mental health deaf services and ($68k) adjustment for mental health community day programme. ∑ External provider payments o Pharmaceuticals expenses are $305k favourable in the month with $223k from lower claims and $83k from higher Pharmac rebates. o Year to date pharmaceuticals expenses are $1,180k favourable with $734k from higher Pharmac rebates, $189k relating to GST claimed on rebates, and $257k from lower claiming. o Laboratory costs are ($1,512k) adverse for the month and ($7,596k) year to date which reflects the new contact for lab services. o Capitation costs are ($12k) adverse for the month and ($389k) year to date which for free services for under 13s and other Ministry funded programmes. o Aged residential care costs are $49k favourable (rest home and hospital level) for the month and $691k year to date because of lower overall volumes. While there are higher volumes of clients receiving dementia and rest home

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level care this has been offset by a greater decrease in clients receiving hospital level care. o Other HOP costs are ($49k) adverse for the month and ($565k) year to date with higher residential care for under 65s for increased clientsand higher than expected respite care and day programme costs. The month result also includes an accrual for IBT equivalent to the funding received this month of $76k. o Mental Health is $100k favourable for the month and $342k year to date with lower residential care costs offset by lower IDF inflows, the transfer to the Provider Arm of $68k of costs and savings generated from contract changes for day programme and respite services. o The Savings line shows ($147k) adverse for the month and ($1,325k) year to date because savings are recognised against other lines. o Other expenses are $44k favourable for the month and $604k for the year to date. This month savings of $60k from quarterly rheumatic fever costs (offset by lower revenue) have been partly offset by ($18k) higher general medical services (GMS) claims. The year to date variances are due to lower travel and accommodation costs, lower rheumatic fever costs which is offset by lower revenue, the release of an accrual for PET scans which is no longer required as costs are now reflected in IDFs, savings of $63k recognised in child and youth costs, recovery of screening costs and funds from our PHO. o IDF wash-ups (prior year); the 2014/15 net wash-up ($160k) adverse as a result of the wash-up for outpatients being higher than expected. o IDF outflows are ($365k) adverse for the month and ($1,447k) adverse year to date. The result for the month includes ($325k) higher outflow wash-ups and ($40k) from agreed service changes. The year to date result includes ($981k) inpatient outflow wash-ups, ($87k) outpatient wash-ups, ($193k) pharmaceuticals wash-ups and $100k favourable wash-up for PCTS. o The provision for IDF wash-ups includes a monthly amount of $89k, which comprises $17k per month for additional outpatient volumes and $72k per month for cardiothoracic volumes to meet the required target. The annual budget included $200k for additional outpatient volumes and a further $863k which was budgeted from the electives funding for cardiothoracic volumes to meet the required target.

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8.3 CAPITAL AND COAST DHB SUMMARY Financial Statement of Performance

Month Capital & Coast DHB Year to Date Annual Variance Funder Result Variance Variance Forecast vs Actual vs Actual vs Mar-16 Actual vs Actual vs Year End Annual Last year Annual Forecast vs Actual Budget Last year Budget Last year Actual Budget Last year Budget Last year Forecast Budget Actual Budget Last year

57,312 57,312 57,696 (0) (385) Base Funding 515,806 515,806 515,742 (0) 64 687,742 687,742 678,339 0 9,403 486 3,376 3,678 3,192 2,801 877 Other MOH Revenue 30,588 27,213 26,752 3,837 42,048 37,511 36,200 4,537 5,847 30 30 86 0 (56) Other Revenue 304 269 1,899 35 (1,595) 358 358 1,883 0 (1,524) 16,804 16,747 14,980 57 1,824 IDF Inflows 151,996 150,975 135,788 1,022 16,209 202,474 201,216 193,716 1,258 8,758 77,824 77,281 75,564 543 2,260 Total Revenue 698,695 694,262 680,180 4,433 18,515 932,622 926,827 910,138 5,795 22,484

678 678 678 0 0 DHB Governance & Administration 6,098 6,098 6,098 0 0 8,130 8,130 8,130 0 0 46,692 46,584 46,001 (108) (691) DHB Provider Arm 421,127 419,940 411,354 (1,187) (9,773) 562,850 561,132 550,463 (1,718) (12,387) External Provider Payments: 0 0

4,854 5,433 5,754 579 899 - Pharmaceuticals 49,269 49,175 49,092 (94) (177) 66,670 65,759 64,854 (911) (1,816) (29) 87 165 116 194 - Laboratory 796 783 747 (12) (49) 1,383 1,383 1,259 0 (124)

5,083 4,909 4,398 (174) (685) - Capitation 43,038 41,554 40,440 (1,484) (2,597) 57,338 55,458 54,495 (1,880) (2,843) 1,430 1,358 1,295 (72) (134) - ARC-Rest Home Level 12,757 12,045 11,621 (711) (1,136) 16,912 16,031 15,500 (881) (1,412) 3,645 3,614 3,625 (32) (20) - ARC-Hospital Level 32,642 32,056 31,656 (586) (985) 43,445 42,664 42,459 (781) (986) 2,404 2,273 2,331 (131) (73) - Other HoP 20,282 20,285 20,612 3 330 27,451 27,057 27,661 (394) 210 1,796 1,901 1,833 105 37 - Mental Health 16,099 17,339 16,937 1,239 837 22,206 23,037 22,390 831 184 (42) (42) 0 0 42 - Mental Health Savings (378) (378) 0 0 378 (500) (500) 0 0 500 664 664 627 (0) (37) - Palliative Care / Fertility / Comm Radiology 5,994 5,994 5,533 0 (461) 7,986 7,986 7,423 0 (563) 0 (158) (0) (158) (0) - Savings Plan (474) (1,425) (0) (951) 473 (1,900) (1,900) 0 0 1,900 2,572 2,522 1,056 (49) (1,515) - Other 18,945 18,854 17,233 (91) (1,712) 26,453 25,699 22,216 (754) (4,237) 6,143 5,934 5,508 (210) (635) IDF Outflows 53,935 53,475 51,219 (460) (2,716) 72,202 71,348 67,682 (854) (4,521) 75,890 75,756 73,272 (134) (2,619) Total Expenditure 680,129 675,796 662,543 (4,334) (17,587) 910,627 903,285 884,532 (7,342) (26,095) 1,934 1,524 2,293 410 (359) Net Result 18,566 18,467 17,638 99 928 21,995 23,542 25,606 (1,547) (3,611)

30 PUBLIC CPHAC_DSAC Committee Papers 20 May 2016 - 2.0 DISCUSSION PAPERS

Overall the net result for Capital & Coast DHB for the month of March is $410k favourable and $99k for the year to date. ∑ The main reasons for this favourable variance in the month are $389k pay-out from Pharmac for Discretionary Pharmaceutical Fund (DPF) recognised in March and $150k accrued for GST credit from Pharmac for the second half of the 2015/16 financial year. ∑ Also in March $149k recognised in the Corporate cost centre for laboratory savings ($728k year to date). The year to date result also includes a total budgeted savings of $1,425k being achieved. ∑ This month’s result includes savings of $129k ($1.254m year to date) relating to budgets that are no longer required as the contracts have not been renewed/the funding re-prioritised. This favourable variance is largely off-set by the adverse results in IDF outflows ($244k) and ARC costs ($104k). Monthly Variances

Expenditure ∑ Pharmaceuticals expenses are $579k favourable for the month from:. o $389k pay-out from Pharmac for Discretionary Pharmaceutical Fund (DPF) recognised in March and $150k accrued for GST credit and $23k recognised for community pharms IDF wash-up. o Additional Pharmac rebate ($142k per month). ($26k) is unbudgeted Pharmacy allocation costs for Free Under 13s which are covered by additional MOH revenue. This favourable variance is off-set by higher than budgeted actual claims of ($99k) for the month. ∑ Laboratory costs are $116k favourable in March of which: o $86k related to an accrual released during the month for quality payment budget to Aotea Pathology as this service is now part of WSCL main contract and $11k favourable adjustment was made for the accrual to Hutt Valley DHB for the miscellaneous tests.

o $25k related to NZ Blood Services being lower than expected and the balance $9k is related to 3DHBs laboratory project costs. o The balance ($15k) is related to laboratory savings for the month recognised in the corporate cost centre ($149k). ∑ Capitation costs are ($174k) adverse for the month. Of this ($116k) relates to expenditure for Free Under 13 services, ($21k) is related to Care Plus, ($13k) is related to VLCA service, ($5k) is related to IPIF, all of which are offset by MOH revenue. This variance also includes ($19k) less than budgeted GMS claims. ∑ Aged residential care costs, which are demand driven, are ($104k) adverse for the month (rest home $93k and hospital level $32k). ∑ Dementia care is ($54k) adverse, Rest Home level care is ($18k) adverse, Hospital level care bed usage is ($18k) adverse, Psychogeriatric care is ($14k) adverse.. ∑ Other HOP services are ($131k) adverse for the month of which ($133k) is off-set by additional MOH revenue for IBT. The balance is related to demand driven costs based on the volumes. ∑ IDF outflows are ($210k) adverse for the month. In March, Funder booked ($244k) adverse wash-ups for IDF outflows. IDF outflows are $654k (6 per cent) over budget (equally phased) as at the end of February. This extrapolates to $981k at the end of March. Key drivers are Paediatric oncology and two “big” cases in Cardiothoracic, which are unlikely to reverse. Other specialities are also overspent but more likely to alter through the coming months. ∑ IDF outflows are ($210k) adverse for the month. In March, Funder booked ($244k) adverse wash-ups for IDF outflows. IDF outflows are $654k (6 per cent) over budget (equally phased)

Capital & Coast District Health Board

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as at the end of February. This extrapolates to $981k at the end of March. Key drivers are Paediatric oncology and two “big” cases in Cardiothoracic, which are unlikely to reverse. Other specialities are also overspent but more likely to alter through the coming months.

Year to Date Variances

Expenditure ∑ Pharmaceuticals expenses are ($94k) adverse YTD, of which ($236k) is off-set by additional revenue for Pharmacy allocation costs for Free Under 13s. This result also includes a $203k year to date favourable IDF wash-up recognised for community pharmaceuticals costs and $505k from GST credits on rebates. The 15/16 Pharmac rebate accrual has been increased to match the latest Pharmac forecast which has resulted in a favourable variance to budget YTD of $1,278k. Also in March 2016, a $389k pay-out from Pharmac for Discretionary Pharmaceutical Fund (DPF) is recognised. These favourable movements are offset by actual claims which are ($2,233k) adverse YTD. ∑ Laboratory costs are ($12k) adverse year to date of which ($115k) is related to the adjustment for the laboratory contract savings recognised in the corporate cost centre off-set by the $76k favourable variance in laboratory project costs and $26k related to less than expected costs for New Zealand Blood Services. ∑ Capitation costs are ($1,484k) adverse YTD. Of this, ($1,045k) relates to expenditure for Free Under 13s service for which we have received additional MoH revenue and similarly ($158k) for Care Plus, ($123k) for VLCA, ($103k) offset by IDF revenue for ManageMyHealth and POAC contracts, ($25k) for IPIF and the balance ($30k) variance is related to less than expected GMS Clawback because of Capital & Coast DHB not claiming GMS for Kenepuru hospital. ∑ Aged residential care costs, which are demand driven, are ($1,297k) adverse (rest home $711k and hospital level $586k). Most of the adverse variance ($1,223k) is attributable to higher volumes than expected and ($74k) is attributed to higher prices. ∑ Mental Health costs are $1,239k favourable YTD. This variance includes funding not expected to be spent this year, wash-ups from prior years for Home Based Support Services and expected underspend in flexi- funding ∑ The savings line shows ($951k) unfavourable because actual savings are recognised in other lines. ∑ IDF outflows are ($460k) adverse year to date. March year to date the Funder booked ($491k) adverse wash-ups for ID outflows. Activity based IDF outflows are $654k (6 per cent) over budget (equally phased) as at the end of February. This extrapolates to ($936k) at end of March. Key drivers are Paediatric Oncology and two “big” cases in Cardiothoracic, which are unlikely to reverse. Other specialities are also overspent but more likely to alter through the coming months.

Capital & Coast District Health Board

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PUBLIC

DISCUSSION PAPER

Date: 20 May 2016

Author Dr Pauline Boyles Senior Disability Advisor, Service Integration Development Unit

Endorsed By Sandra Williams Acting Director, Service Integration Unit

Highlights update: Subject Disability Plan Quarter Three

New Zealand Sign Language Review extract of findings New Zealand Health Strategy: Priority Groupings Sub Regional Disability Forum

It is recommended that the committees: Recommendation Note: 1) Progress monitoring report on Disability Implementation Plan 15/16 2) Executive summary and plan for 16/17 New Zealand Sign Language Review 3) Planning for Sub Regional Disability Forum 3 June 2016

Endorse: 4) Development of a five year action plan for improved access to health services for deaf and hard to hearing people 5) Development of a clear policy based on emerging themes and findings from the sub regional review in consultation with health staff, deaf community and chosen allies

Appendix 1: Disability plan monitoring framework

Appendix 2: NZSL population information

Appendix 3: Research framework summary

Appendix 4: NZSL project integration diagrams

Appendix 5 : NZSL project references

Appendix 6 : Sub Regional Disability Forum information page

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PUBLIC 1. Purpose

1.1. To provide progress update on third quarter implementation of the Sub Regional Disability Plan, Appendix 1.

1.2. To provide an executive summary of the analysis of key findings within the NZSL review led by SIDU 2015.

1.3. To provide details of planning for the intersectoral Sub Regional Disability Forum on 3 June 2016.

2. Third quarter update on sub regional programme initiatives

The third quarter of the 15/16 planning year for Disability Responsiveness has been a time of consolidation as work towards the key goals moves on. See Appendix 1 for high level outcomes.

In honour of New Zealand Sign Language week 9-16 May this report centres on an executive summary of findings of the Sub Regional review on access to health services for deaf people. This represents the first published report which will be published later in full within a variety of media.

3. New Zealand Sign Language (NZSL) research

The following report is an executive summary of the key findings from the NZSL in health enquiry based action research which began in May 20151. It is planned that a report of findings will be released publically in the next few months.

There is little New Zealand and international literature on access for pre lingual deaf people to general health services. It is hoped that the findings of this research will contribute significantly to scholarship and improved service access. An academic article for one of the key international health journals will be considered for submission over the next twelve months2.

3.1. The international context and its relevance

International studies have found that overall, people from the deaf community have poorer health outcomes and access to health care as compared with the general population 3. In a paper to CPHAC/DSAC March 2015 a report on a visit to a specialist mental health service in England highlighted the parallel issues faced by British deaf people4. Those findings and the return visit and presentation by Dr Steve Carney5 in January 2015 have contributed to the research questions and approach featured in this report. An extract from that report (CPHAC DSAC March 2015) is noted here:

1 Funding was provided by SIDU mental health team and professional leadership by the Disability Responsiveness Team. It is recognized that responsibility for improving access for deaf people lies with all portfolios including children and older people. 2 Research drawn on in this review has been largely centred around access to mental health services which is indeed well documented internationally 3 http://www.sciencedirect.com/science/article/pii/S014067361161670X#bib2 on Mental Health and deafness Lance

4 People who are members of the deaf community and who identify as culturally deaf have preferred to use the term deaf with capital D. It is emerging now that there is a gradual change in this practice. Mc Kee notes This distinction between the bio-medical and socio-cultural model is often represented by the words capital ‘D’ deaf and lower case ‘d’ deaf (deaf=culturally deaf, deaf=audio logically deaf). The majority of those represented in this study identify with the socio- cultural model. However I will use the word ‘deaf’ so as not exclude anyone (McKee, 2001; Prior, 2014). 5 Dr Steve Carney is Director of Mental Health Services central region and a founder of the earliest services in England 2

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PUBLIC Not surprisingly literature makes connections between the incidence of mental health issues, and the communication difficulties health services created by a lack of cultural understanding of the needs of people who are deaf 6.

The UK report by Sign Health 2014 shows that deaf people are at risk of potentially life threatening illnesses because of misdiagnosis and poor treatment. The cause is considered to be a lack of interpreters at consultations, bad access to services and a shortage of health information in an accessible form7.

Other research reports document similar issues as the main contributors to poorer outcomes include poor knowledge of deaf culture and specific communication needs by health care staff (clinical, non clinical and service providers) and insufficient provision of interpreters8.

A study with deaf people, who use American Sign Language, highlighted the huge contribution a lifetime of poor communication and isolation has on the development of mental health problems and the need for professionals within mental health services not to re-enact this experience with deaf patients9.

New Zealand research is less prolific. Research completed in 2000 in New Zealand showed the deaf community has a high risk of mental illness, a high need for mental health services and the perception of current mental health services as being inaccessible and inadequate10.

An understanding and definition of deaf culture and language is central to the wellbeing of deaf people11. Therefore a lack of experience and understanding by health practitioners can lead to misdiagnoses and long periods of costly, ineffective care, particularly within mental health services12.

The Human Rights Commission Report (2013), found two thirds of DHBs had policies around access to interpreters but that barriers for deaf people accessing healthcare continue. Examples from the report included staff reluctance to book interpreters which for many reasons was common. In these instances a deaf person’s right to effective communication, to be fully informed, to make an informed choice, give consent and have their cultural needs taken into account might be impacted.

The Operating Policy Framework of the Crown Agreement with DHB’s has indicated since 2006 that there should be documented NZSL plans. Actions to implement NZSL plans have been limited as the expertise and resources available to DHBs has been limited 13.

6 deaf people who use New Zealand Sign Language prefer to be known as deaf with a capital D. This is in contrast to deafness and as an impairment of hearing more focused on deficit; it is hard to measure internationally the numbers of deaf due to the variation in the communication and culture within communities of deaf people. British and New Zealand Census data is still unclear but in NZ it is assumed there are 6 to 7000 people who are prelingual deaf http://www.sciencedirect.com/science/article/pii/S0140673611611434 Lancet article deafness damages your Health Editorial Lancet 2012 – gives good overview 7 http://www.signhealth.org.uk/sick-of-it-report-professionals/ 8 (Royal National Institute for the deaf, 2004) 9 Steinberg et al (1998) Cultural and Linguistic Barriers to Mental Health Service Access: The Deaf Consumer’s Perspective. American Journal of Psychiatry 155: 982-984. 12 Bridgman, G. D, Macpherson, B., Rako, M., Campbell, J, Manning, V., Norman-Kelly, T(2000). A National Epidemiological Survey of Mental Illness in the New Zealand deaf Community. Presented to the 5th European and 2nd World Conference on Mental Health. 5th European and 2nd World Conference on Mental Health and deafness. 18-21 October, Copenhagen, Denmark.

11 (The Coalition of deaf Mental Health Professionals, 2014) 12 http://www.tepou.co.nz/news/working-with-deaf-people-with-mental-health-needs/434 http://www.cdmhp.org.nz/About/DraftModel 13 Sub regional DHBs enable NZSL as part of interpreter policy but no individual policies exist. Under the Disability responsiveness policy CCDHB (now being extended sub regionally) the principle of ensuring access for deaf people as part of the overall planning is defined. However this review will lead to a separate action plan for incremental improvement in access for deaf and people who are hard of hearing 3

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PUBLIC 3.1.1 Prevalence of deafness in the NZ population

In 2013, the census indicated 20,000 New Zealanders identified as NZSL users www.stats.govt.nz)14. This population includes deaf people, their extended families and whānau, people with communication difficulties, NZSL interpreters and adults who are second language learners of NZSL.15 The population of those who are identified as hearing impaired (people who have difficulty hearing even with hearing aids or devices) represent nine per cent of the population. See Appendix 2 This data identifies 10,000 NZSL users who identify as bilingual (NZSL and English). The other 10,000 are either NZSL only (1,604) or use a different make up of languages.16 Deafness tends not to discriminate and the ethnic profile of deaf people tends to mirror wider society, with the exception of over- representation from minority ethnicities who have differing access to the determinants of health and influence their access to health interventions that impact ear health17. In New Zealand anecdotal evidence suggests Maori have been disproportionately overrepresented in the adult deaf population for several generations. More recent diagnostic data (reporting on ethnicity) collected over the last three decades substantiates this hypothesis. The 2006 census data found thirty nine per cent of deaf people under the age of nineteen were Maori (www.stats.govt.nz).

See Appendix 2

3.1.2 NZSL use at a sub regional level

Appendix 2 shows the NZSL user information by DHB for 2006 and 2013. According to this data set there are 3,500 NZSL users in the sub region, up from 2,500 in 2006. In spite of a slight national decrease in the use of NZSL, there was interestingly an increase in the sub-region, in all three DHBs. From a national trend when national the number of NZSL users decreased.

3.2 Scope of NZSL sub regional review

The research focus 18 addressed the needs and experiences of pre lingual deaf users of New Zealand Sign Language. The distinction between pre lingual deaf and those who are hearing impaired or “hard of hearing” 19 is important to understand. The latter population is much larger and has a range of needs which are variable, some of which are being well addressed in current improvement plans. The deliberate focus on those with prelingual deafness highlights access issues and is leading to a plan for system and service adaptation which will benefit all who are both deaf and “hard of hearing” 20.

14 A question on use of NZSL asked in 2013 census at the request of the human rights commission and deaf community advocates wanting to strengthen use of NZSL as a language as opposed to a deficit approach. The 2006 census for numbers of deaf people in New Zealand are used as the clearest statistical indicator 15 the census asks about use of NZSL in daily life which is the 20000 number and the disability survey asks about hearing impairment which is also a high number as it includes mostly people going deaf later in life – Deaf Aotearoa NZ (DANZ) and a few local researchers (Pat Dugdale and Rachel McKee) talk about 4-7000 NZSL as an estimate based on the number of deaf people on the DANZ books. This concurs with the 2006 figure of 7740 16 People who use NZSL alone (1600) or who use English as a second language have difficulties with interpretation of written and spoken English. Health literacy is a significant issue for deaf people using health services including the ability of clinicians to understand how to communicate with people who use NZSL. 17 Digby et al 2014 https://www.nzma.org.nz/journal/read-the-journal/all-issues/2010-2019/2014/vol-127-no.-1398/6225 18 The research approach included an overall research steering group and separate focus groups based on age and experience 19 The term “hard of hearing” is preferred now by those active in the deaf community 20 Since the communication needs of a wider disability population are often similar, any future plans will aim to improve access for those with specific communication needs for example people with autism as well as those with a variety of hearing impairments. However the needs of NZSL users are the most difficult to fully meet in the health system hence the focus of this piece of work. 4

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PUBLIC While there is widespread concern on the incidence of mental distress and access to mental health services in New Zealand and internationally, the team made a decision to look at the wider health system access. A focus on increased wellbeing, prevention of illness and improved access in the wider system will aim to address fundamental access issues to mainstream health services for deaf people. The issues are complex and hard to agree. There is no doubt that while deaf people are not pre- disposed to mental health issues, the social and environmental barriers they face often lead to increased incidence of mental health distress which is well documented in the previous section, 3.1. Provided they are created with and by deaf community in collaboration with clinicians, NGOS and the Ministry of Health DHBs should consider national initiatives to improve mental health services. This sub regional review and subsequent improvement plan will aim in the meantime to contribute to a more skilled work force in the general health area and thus strengthen the resilience of deaf people to gain early and timely access to services.

The final report will be translated into New Zealand sign language and presented in a range of other formats to demonstrate good practice in accountability to those who so generously shared their stories21.

3.3 Project rationale and framework

3.3.1 Rationale

The ‘New Zealand Sign Language in Health’ project was initiated by the Service Integration and Development Unit (SIDU) of Capital and Coast, Hutt Valley and Wairarapa District Health Boards (DHB’s) to inform the development of a NZSL policy for the 3DHB’s. The ‘NZSL Enquiry’ a report commissioned in 2013 by the Human Rights Commission22 recommended DHB’s develop comprehensive NZSL interpreting and translation policies, including close consultation with the deaf community23. The legislative imperatives for government departments have been in place since 200324. The New Zealand Sign Language Act led to the inclusion of NZSL policy as one of the operational obligations under the Public Health and Disability Act since 2006. The recently released NZSL Board Action plan (2016-2018) has listed ‘Access to services and information in NZSL’ as a priority area and will be monitoring the existence of NZSL policies within ‘core government information and services’ such as DHB’s within 2016/2017 25.

3.3.2 Project framework

A number of goals were identified. The project was designed to achieve some overall findings in Phase One until March 2016 followed by Phase Two from April 2016 until May 2017. The findings from phase one as documented below (3.5) will contribute to an overall five year action plan. The project leads set up a research steering group to oversee a piece of participatory action research based on appreciative enquiry principles. The project itself continues into phase two drawing on the research findings summarised in 3.5.

The high level project aims are as follows:

21 The recently released NZSL Board Action plan (2016-2018) has listed ‘Access to services and information in NZSL’ as a priority area and will be monitoring the existence of NZSL policies within ‘core government information and services’ such as DHBs within 2016/2017 (Office for Disability Issues, 2016). 22 (Human Rights Commission, 2013) 23 The Human Rights Commission (2013) “A New Era in the Right to Sign. His Houhanga Rongo te Tika Ki Te Reo Turi: Report of the New Zealand Sign Language Inquiry.” September 2013). 24 A cabinet paper on the NZSL Bill24 noted NZSL policies for DHB’s must be comprehensive, must specify the use of qualified NZSL interpreters and must ensure that DHB services and information are accessible. 25 (Office for Disability Issues, 2016) 5

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PUBLIC • to gain an evidence based understanding of the specific issues and experiences deaf people face when accessing all 26secondary services across Wairarapa, Hutt Valley and Capital and Coast District Health Boards • to record and document the range of issues and experiences of staff employed within the district health boards when working with deaf clients and patients within a secondary health setting • to use the evidence gained as a foundation of a five year New Zealand sign language plan for the sub region27

3.4 Research methodology (Appendix 3)

The research steering group and the project team worked together on developing the methodology. An appreciative enquiry approach 28 based on grounded theory has ensured deaf people and their chosen allies have led this research alongside the project team. In this way, deaf and hearing people were co- researchers ensuring the enquiry was based at all times on emancipatory principles29. The research group designed the questions and the methods of data collection, i.e. the use of focus groups and the structure of the focus groups. The focus groups were led by an appropriate deaf community member. See Appendix 3 for methods, data collection and data analysis. Ethical approval was obtained as per CCDHB policy.

A thematic analysis has been undertaken by the project lead supported by the steering group. Dr Kirsten Smiler of Victoria University and Dr Rachel McKee30 provided academic guidance and subject expertise. A full national and international literature review will be published as part of the full report and the research framework and methodology have reflected good practice in health consumer driven research.

This executive summary is using the WHO framework for integrated care to highlight those key drivers which are most relevant in future development of health service and system integration, as documented in the diagram below.

The concept of creating an enabling environment is highly relevant to the findings and feedback from deaf people and their allies involved in this research enquiry31.

26 Includes general and mental health and addiction services who co led this project 27 All DHBS have been obligated to develop a plan since 2006 when NZSL become an official language. There is scant evidence country wide of a specific plan to improve access. Auckland and Wellington have the biggest deaf populations 28Appreciative inquiry (AI) is a methodology for social transformation. AI uses a strength based approach to engage participants in active conversations to lead to change. As part of participatory research, AI works to diminish assumed power and positionality dynamics and instead have the research done in partnership with the researcher and community. 29 Boyles, P. (1998). Enabling Participation Through Partnership: Emancipatory Research for Change for Disabled people (Doctoral thesis, Massey University, Palmerston North, New Zealand). Retrieved from http://mro.massey.ac.nz/handle/10179/2432 30 Dr Kirsten Smiler recently completed her PHD research which explores the nature and impacts of early intervention for Māori deaf/hearing-impaired children and their whānau. Dr Rachel McKee is Programme Director of NZSL Studies at Victoria University. She has published research across a range of areas in deaf Studies and is currently serving on several government advisory groups addressing policy relating to NZSL. 31 The internationally agreed frameworks for health integration and the guiding framework around working with disabled people are used to integrate all initiatives into mainstream health services. There is limited value in redesigning models for any one population. This addressed the triple aim principles underpinning all health service development 6

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PUBLIC

3.5 Summary of key findings (See diagram Appendix 4 for detailed framework)

WHO Integrated Framework Creating Enabling Environments 3DHB Disability Implementation World Health Organisation Examples of NZSL project Plan integration Health literacy and health Health Reorienting the model of care information Improving access to NZSL Access Coordinating Services interpreters for deaf Empowering and engaging deaf community leadership in Inclusion + Support people education and service co design Community leadership in Strengthening governance and Leadership electronic enablers and system accountability monitoring

Under each of these themes some key feedback is included below and early indicators for an action plan over the next twelve months.

4. Creating an enabling environment

This is central to all aspects of health system development and fits well with improving access for deaf people. Findings below identify current barriers as perceived by deaf people using health services and health professionals who work on the front line of those services.

The WHO model translated into a local context is appended (Appendix 4) to demonstrate international principles in relation to service improvement for deaf people.

5. Empowering and engaging people

5.1.1. The use of a deaf socio-cultural lens results in better health outcomes for the deaf community

Fundamental to the research was that of empowering and engaging people from the target group. (leadership by deaf people was identified in both English and American contexts (see 3.1) as critical) and is in keeping with WHO and national direction on consumer engagement. Multiple agencies are involved in improving access for deaf to government services. For example, MBIE launched a trial of a remote video interpreting service in 201432.

Leadership by deaf people with hearing allies and professionals is essential to the success of any plan since the limitations imposed by any one lens will invalidate the success of any model of care. The following excerpt from the research summary makes this point well:

When a deaf person is viewed through a socio-cultural lens, the risk of misunderstandings and misdiagnoses is less likely. Historically, misdiagnosis is more common within the mental health arena as

32 Early results for WINZ and ACC were promising but it does not appear to have been rolled out further. Any one solution to access to interpreters is unlikely, particularly in a health context. Findings in this enquiry are critical to all aspects of health services 7

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PUBLIC many variables need to be taken into account when carrying out assessment and treatment with people who are deaf. NZSL interpreters when present often act as brokers between the two cultures, reducing the risks of misunderstanding. It has been reported, however, that many interpreters feel inadequately trained and supported. There is an additional issue when staff do not know how to work effectively with interpreters. Overdependence on an interpreter often fails to achieve full communication between the NZSL user and other parties, particularly within a clinical setting33.

Action required See section on work force development 4.2.1 and 4.6.2

5.2. Service coordination

5.2.1 Current booking systems for NZSL interpreters

There was a general consensus between the deaf community, DHB staff and interpreters that the current NZSL booking systems often do not meet the needs of deaf people accessing health care within the 3DHBs. Deaf people who typically access hospital services when they are more unwell can experience diagnostic and treatment delays due to cancellations or unavailability of suitably experienced NZSL interpreters. International research indicates that not using interpreters can lead to an increase in costs due to longer inpatient stays and recovery times, higher readmission rates and an increase in invasive and unnecessary procedures34.

Action required The DHB is currently researching the current NZSL interpreter spend to address the possibility of using the current provider interpreter budget for more sustainable use of interpreters with health skills. This could be done by providing ‘in house’ NZSL interpreter services or developing sustainable contractual arrangements. Further work is needed to develop the skills of NZSL interpreters working in health and mental health settings such as joint training between SLIANZ, DANZ and the DHBs.

5.2.2 Arranging and getting to a health appointment

The research shows there are many barriers for deaf people as they travel through health services. One example that came from the research where there is room to improve is making the initial appointment. It can prove challenging as many departments are not easily accessible via text or email.

Action required In order to improve the ‘travel path’ for deaf people the DHBs will continue to build on existing disability responsiveness tools and work on reducing and removing barriers.

The DHB will build on the current disability alert system through promotion with the deaf community, investigate ways of alerting deaf patients when they are being called to an appointment, create an ‘accessibility for the deaf community’ audit tool where departments can independently assess their accessibility for deaf people, develop a pre printed card for the deaf person which can be handed to DHB staff instructing them how to book an interpreter, develop tools that DHB staff can use for communicating with patients whose first language is not English, provide in house NZSL classes, and further scope and develop the ‘deaf champion’ roles.

5.3. Reorienting model of care

Change to models of care is high on the health agenda and it is important to review any model of care through multiple lenses. Issues with current models of care are seen through the views of deaf people

33 This is particularly true when the clinician is attempting to explain a diagnosis or a medication regime. 34 (Victorian hospital study; Napier, 2006; Midddleton, 2010; Flores, 2005 & Harmer, 1999). 8

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PUBLIC involved. Also included are the issues for health professionals grappling with the issue of consent for deaf people in the current health system 35.

5.3.1 Deaf people need full access to their health information

NZSL interpreters are often not being used when a deaf person is accessing health services. Communication strategies such as using pen and paper, gesturing, lip reading or using family/friends to interpret are common strategies, though the risks and limitations of these methods are often not fully understood. Access to health information, including how the DHB presents/relays the information, relates to wider DHB objectives around health literacy.

5.3.2 Improved understanding of health care and needs may result in greater health outcomes

Many deaf people talked about their plans to discontinue the treatment recommended by their treatment provider. It was clear that the deaf person involved often did not understand why they were required to have these repeated procedures and what the likely consequences could be. Research indicates ‘patient comprehension is a pre-requisite for compliance with medical instruction’36. A link exists between a lack of understanding of health information and poor adherence to treatment which can result in poorer health outcomes as described in overseas literature 37.

5.3.3 Deaf people need equitable healthcare within ED services

Unplanned, urgent or crisis presentations to ED (for physical and mental health reason) were commented on by the deaf community and DHB staff as the biggest challenge they face in accessing and providing equitable healthcare. Many deaf people reported difficulty requesting a NZSL interpreter at ED38.

Currently, through liaison with external agencies and investigating overseas processes, research into feasible ways to ensure 24/7 access to NZSL interpreters is underway. This may include the use of technology such as VRI (video remote interpreting).

5.3.4 When health professionals are supported to gain full consent when treating a deaf person better health outcomes are achieved

DHB staff acknowledged adequate consent was often not gained prior to carrying out health procedures as they were unsure how to go about this. The DHB will develop a number of initiatives to support staff achieve full and effective communication with deaf patients, such as a targeted deaf responsiveness/awareness training programme, easily accessible information and resources, guidelines for booking and using interpreters and access to the existing ‘deaf champion’ network.

Action required The DHB will investigate the feasibility of a ‘virtual deaf mental health group’ that will scan the primary, secondary and NGO sector 39 This group will connect a team of professionals with knowledge and understanding of NZSL and deaf culture and be accessible to clinicians working with deaf patients/clients. The group would promote culturally safe and effective treatments and support staff often working in isolation of the socio-cultural view. Guidelines for carrying out assessment and treatment of deaf people

35 This issue is very similar for people with learning and other communication difficulties including English as a second language 36 (Harmer, 1999). 37 (Harmer, 1999). 38 There are issues obtaining NZSL interpreters at night or at short notice. It also reported that many interpreters feel less comfortable with urgent calls to general and mental health services due to the waiting times and the perceived skills sets they often lack. 39 A deaf champion group currently exists for the three district health boards and needs to be strengthened as the demands on those individuals are at times significant especially during mental health emergencies 9

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PUBLIC within mental health services can further assist with the provision of culturally safe practice. Research into existing international guidelines and collaboration with the deaf community will be essential to the success of the plan.

5.4. Strengthening governance and accountability

Accountability for services to the deaf community sits with all government agencies. As stated in the background 3.2, obligations for health providers have not been linked to mandatory reporting for a NZSL access plan. With the publication of the NZSL board review noted in 3.2 there will be increasing pressure to address the disparities faced by people who are deaf. Under the Disability Implementation Plan for the sub region a quality dashboard is being developed and the particular issues for the deaf community will be addressed within that framework. Monitoring of how deaf people access and use the health system will be more visible when the alerts available in secondary services and in primary care flag the immediate communication needs of the deaf person.

Due to the financial state of all DHBs any plan will be developmental but some immediate changes are possible as noted in previous sections within current DHB business as usual.

The Disability Responsiveness policy mandates work force development around disability responsiveness for all health professionals. It is acknowledged that special attention is required to meet the needs staff supporting deaf patients of all areas. Strengthening of the disability policy to explicitly address the needs of deaf will be included as the policy is rolled out across the district health boards.

Action required The DHB will work with external agencies to increase access for the deaf community to accessible health information. The DHB will also support DHB staff to provide health information in a way that is accessible, possibly with the use of technology such as 3D images.

5.5. Current sub regional work (disability implementation plan Appendix 1)

Since the start of the NZSL in health project work has been occurring across the sub region to start work towards the goal of improving health outcomes and access for deaf. Some of the work is listed below:

• a range of educational videos are being developed in NZSL; for example showing administration interaction with a deaf person • working with Deaf Aotearoa when developing NZSL taster classes and education resources • E-Learning includes responsiveness to deaf and hard of hearing for all professional groups • a 12 month continuation of the NZSL in health project leads secondment confirmed to work on five year implementation plan • deaf champions group established for secondary services

5.6. Summary of overarching recommendations for action

• development of a five year action plan for improved access to health services for deaf and hard of hearing people • development of a clear policy based on emerging themes and findings from the sub regional review in consultation with health staff, deaf community and chosen allies

5.6.2 High level actions

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PUBLIC 1. Research availability of funding currently used for interpreters 40. This may include use of an interpreter budget for more sustainable use of interpreters with health skills who may have a workforce development role41. 2. Identify where possible with disability responsiveness team external and provider arm sources of funding for an integrated solution to improved access for deaf people including health literacy resources. 3. Develop with disability responsiveness team an education plan for staff sub regionally with relevance for primary and community practitioners to be fully implemented by 2018. 4. Publish the research report in a reputable health journal to encourage a shared approach and understanding across DHBs nationally.

The above actions will be integrated into the annual planning and work plans for SIDU population health teams and Disability Responsiveness sub regional team.

6. Sub Regional Disability Advisory Group (SRDAG) update

6.1 Sub regional priorities 2016/17

There are currently two key pieces of critical work being undertaken by SRDAG. Each has been given their own sub working group. See below for more details.

6.2 Biennial Sub Regional Disability Forum

The Biennial Sub Regional Disability Forum will be held on Friday 3 June 2016 at Silverstream retreat. SRDAG has chosen to use this forum as a place for intersectoral strategic discussion, resulting in commitment to action. People invited to the forum include: Board members (including CPHAC DSAC), DHB CEs, MOH representatives, MSD representatives, MOE representatives, local and central government representatives, providers, DPOs, community members and PHOs.

The over arching theme of the forum is ‘Building Community Resilience: Working to create active partnerships’. The Sub Regional Disability Forum will bring together people for an inter-sectoral planning day, to share experiences and knowledge in order to work together for change.

The forum has three main aims:

1. to refresh, reform and update the Disability Responsiveness implementation plan for the sub-region 2. to celebrate the progress made within health services since the creation of the plan 3. to create a tangible action plan for the next two years and share responsibility within expert areas

See Appendix 6 for more detail

5.3 Review of Sub Regional Disability Strategy Implementation plan

The Sub Regional Disability Strategy Implementation plan ‘Valued Lives: Full Participation’ is currently being reviewed by key SRDAG members in partnership with the Disability Responsiveness team. The working group aims to refresh and update the content of the plan, acknowledging the work that has already been completed and give clear direction for the life of the plan. The review is due to be completed in June 2016 and a draft will be available at the forum.

5.4 Bimonthly SRDAG meeting summary

40 This includes current spend and any available external sources of funding. 41 This model has been successfully used in the UK and in various states of the USA 11

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PUBLIC The first meeting of SRDAG in 2016 took place on Friday 2 March 2016 at Silverstream retreat. Adri Isbister (CE Wairarapa DHB), Sandra Williams (Acting Director SIDU) and Taima Fagaloa (Director Pacific Health Directorate) attended this meeting. Each person was invited to speak about their role in relation to disability responsiveness. SRDAG members were invited to ask questions in response. The dialogue has been invaluable to growing the integration across communities and health. SRDAG members were also able to update the group on developments in their respective communities. One is to highlight, in the work Sue Emirali is doing, to investigate the Kapiti health centre and how it could be better utilised by the community.

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PUBLIC

DISCUSSION PAPER

Date: 6 May 2016

From Sandra Williams Acting Director, Service Integration & Development Unit

Author Rebecca Rippon Principal Analyst, Service Integration & Development Unit

Endorsed By Adri Isbister, Chief Executive Wairarapa DHB Ashley Bloomfield, Chief Executive Hutt Valley DHB Debbie Chin, Chief Executive Capital & Coast DHB Subject EQUITY MONITORING INDICATORS

RECOMMENDATION It is recommended that CPHAC/DSAC: a. Note the review of the set of indicators; b. Endorse the proposed set of local equity monitoring indicators; c. Recommend to the three Boards that they accept the set of equity monitoring indicators to be monitored for the next twelve months: breastfeeding rates; immunisation rates; preschool oral health enrolment, arrears, caries free at 5 years, decayed, missing or filled teeth (DMFT) at 12 years; breast and cervical screening; brief advice to quit smoking; cardiovascular disease risk assessment (CVDRA); new born enrolment in General Practice at three months; ambulatory sensitive hospitalisations (ASH); did not attends (DNAs); access to primary care by long term users of mental health and addictions (MH&A) services; access to specialist mental health services; MH&A DNAs; acute inpatient seclusion rates; acute inpatient readmission rates; d. Note the indicators will be reviewed again in twelve months’ time; e. Note the most recent performance against equity monitoring indicators; and f. Discuss the actions currently planned or underway to improve performance in areas requiring improvement.

APPENDIX 1: Equity Monitoring Indicators

1. PURPOSE

The purpose of this paper is to provide updated performance data for the equity monitoring indicators, as well as a narrative report on activity planned, or currently underway, to improve performance.

2. BACKGROUND

A request was made by the Boards for the development of a small set of core indicators that they could monitor to assess the impact of the DHBs’ planning, funding and service delivery on equity within its population.

Wairarapa, Hutt Valley and Capital & Coast District Health Boards

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PUBLIC From 2011/12, DHBs have been required to produce Māori Health Plans alongside their Annual Plans. A set of national indicators has been developed, some of which were included in the original local equity monitoring indicators. The Trendly website (www.trendly.co.nz/Home/Performance) is a performance monitoring website for the national Māori Health Plan indicators, and is supported by several organisations including Tumu Whakarae (the national collective of DHB Māori Health general managers). Ala Mo’ui, the national Pacific Health Strategy also contains a set of indicators, some of which overlap with the national Māori health indicators.

This report contains a suite of indicators covering many Māori Health Plan and Ala Mo’ui indicators for which reliable data is available, as well as other local equity monitoring indicators. Note that some indicators will only be reported annually.

3. REVIEW OF INDICATORS

The current equity indicators aim to monitor various dimensions of health and health care for populations that are known to have poorer outcomes, in particular Māori, Pacific and lower socioeconomic groups. Much of the information is already presented and reported in some form; the intention is to ensure that this information is regularly reported in one place and considered by Committees and Boards. The indicators were selected based on the following criteria: ∑ Priority - for both the Government and the Boards. ∑ They relate to a wide range of age groups. ∑ Ready availability of data to report. ∑ They represent various aspects of both the process of health care delivery and health outcomes.

∑ Consistency with existing Māori and Pacific health indicator sets.

There are other useful indicators (often longer term in nature) that contribute to our overall understanding of equity issues; however this framework limits the measures to a defined set for monitoring purposes. Monitoring is explicitly action-oriented, with the primary purpose of keeping policies or programmes on course in relation to an explicit or implicit set of criteria (Braveman 20031). The information provided is primarily descriptive rather than explanatory in nature; monitoring data can be used for assessing changes in the magnitude of disparities between different social groups over time.

The table below outlines each indicator and provides a rationale for maintaining it or a suggestion for removal, as well as any new indicators for inclusion.

Domain Indicator(s) Inclusion Rationale Healthy Breastfeeding rates ¸ Well child tamariki ora quality improvement children indicator with long term disparities. Data is beginning to be reported for all WCTO providers (not just Plunket). Also links to childhood obesity. Immunisation rate ¸ Integrated performance incentive programme (IPIF) indicator.

1 Braveman PA. (2003). Monitoring equity in health and healthcare: a conceptual framework. Journal of Health, Population and Nutrition, 21(3): 181-92.

Wairarapa, Hutt Valley and Capital & Coast District Health Boards

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PUBLIC Pre-school enrolment in oral ¸ There has been substantial government health services investment in renewing child oral health School dental examination services over the past five years. Recent arrears rate data demonstrate on-going inequalities in Percentage caries free at 5 years both access to services and outcomes. Mean number of decayed, missing or filled teeth (DMFT) at 12 years Screening Breast and cervical screening ¸ Cervical screening is an Integrated and early rates Performance & Incentive Programme (IPIF) intervention indicator. Ethnic inequalities over a long period of time. Brief advice to quit smoking ¸ Current health target. Māori and Pacific have higher smoking rates than other ethnic groups. Cardiovascular risk assessments ¸ Current IPIF indicator. Māori and Pacific (CVDRA) in primary care should receive CVDRA at a younger age and have higher prevalence of cardiovascular disease. Will include specific reporting on 35-44 year olds in future reporting. Seasonal flu immunisations ˚ Data is no longer routinely reported through IPIF. Access and PHO enrolment coverage ˚ Enrolment rates are generally high and do quality care not change materially over time. There are known issues with numerator-denominator ethnicity classification mismatch. Newborn enrolment in general NEW Early enrolment in a PHO helps ensure practice by 3 months infants are enrolled in / receive all services they require. May be a more useful indicator of child PHO enrolment given ethnicity classification mismatch between PHO and Statistics NZ data. Ambulatory sensitive ¸ ASH rates are an indicator of overall primary hospitalisation (ASH) rates and community care performance, as well as integration of care between primary and secondary. Large and persistent inequalities exist. Hospital ‘did not attend’ (DNA) ¸ Not attending appointments may result in rates (previously only first individuals not accessing health services specialist assessments (FSAs) but that are needed. Rates vary by ethnicity, now reported for medical & with Māori and Pacific people having the surgical FSAs & follow-ups) highest rates. Mental Long term users of Mental Health NEW Long term users of MH&A services are likely health and Addictions (MH&A) services to have poorer physical health outcomes seen by a GP in previous 12 than other people. months Access to specialist mental health ¸ National mental health key performance

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PUBLIC services indicator. MH&A community DNA rate NEW Not attending appointments may result in individuals not accessing MH&A services that keep them well. Acute inpatient unit seclusion NEW Seclusion can and is sometimes used for the hours per 100,000 population wrong reasons and can be used in the place of more appropriate and therapeutic interventions. Acute inpatient readmission rate NEW Unplanned readmissions to an inpatient facility following a recent discharge may indicate that inpatient treatment was either incomplete or ineffective, or that follow up care was inadequate to maintain the person out of hospital.

The inclusion of new measures for mental health and addictions in the equity report is a recent development to ensure greater focus and visibility of some selected indicators. Unfortunately, we currently lack the following building blocks for these indicators: ∑ a benchmark from which to measure movement ∑ an equity target by which to gauge performance, and ∑ in some circumstances, e.g. seclusion rates, a national benchmark from which to assess comparative DHB practice against.

However, with each report we should be able to develop proxies for these building blocks which will be equally as helpful in determining trends and allowing us to further understand what we are seeing and what needs to change. For this first report we have included partial information but this will improve over time.

It is proposed that the full set of equity monitoring indicators be reviewed annually to ensure currency of alignment with other indicator frameworks, and reflect any emerging areas of inequalities and / or new data availability.

Disability In Capital & Coast DHB a set of measures, based on the application of a disability alert in the hospital patient management system, have begun to be reported and are in the process of refinement. Although the disability alert is still relatively new and does not yet represent the entire community population with a disability, it is proposed to include three indicators in the equity monitoring set in future reporting: inpatient average length of stay, outpatient DNA rates, and inpatient readmission rates. These will compare the hospital population with a disability alert against the rest of the hospital population.

4. PERFORMANCE – WAIRARAPA DHB

4.1 Dashboard

Table 1 contains the equity monitoring performance dashboard with the most recent data available as at the end of Quarter Three 2015/16. A traffic light system has been applied to each result according to the key below. Two of the indicators (oral health DMFT and ambulatory sensitive hospitalisations) are Wairarapa, Hutt Valley and Capital & Coast District Health Boards

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PUBLIC not measured as a percentage out of 100; therefore have a slightly different rating system as described in the key. A green or red arrow indicating the direction of change and impact on performance is also included. For access to specialist mental health services, once the target has been reached a judgement has not been made as to whether that is a positive or negative change.

Note that a traffic light rating has not been applied for indicators without a current target. Most mental health indicators are new and targets have not yet been developed.

Oral health DMFT Increase since last quarter indicating Performance result ASH ratio result improved performance Increase since last quarter indicating Target achieved Target achieved At or below NZ benchmark reduced performance Within 0.2 of target Decrease since last quarter indicating Within 10% of target 101-150% of NZ benchmark mean improved performance 0.2-0.5 from target Decrease since last quarter indicating 10-20% from target 150-200% of NZ benchmark mean reduced performance > 0.5 from target > 20% from target > 200% of NZ benchmark No change since last quarter mean

Table 1: Wairarapa DHB equity monitoring performance dashboard

Domain Indicator Māori Pacific Other (or Total) Healthy Full or exclusive breastfeeding at 6 68% children weeks 61% 80% (Total) Data for 2014/15 Full or exclusive breastfeeding at 3 55% months 38% 60% (Total) Data for 2014/15 Any breastfeeding at 6 months 63% 51% 75% Data for 2014/15 (Total) Infants fully immunised at 8 months 97% 98% Data at Mar 2016 (Total) Pre-school enrolment in dental services 73% 102% Data for 2015 Dental examination arrears rate 8% Data for 2015 – note ethnicity not (Total) available Percentage caries free at 5 years 44% 67% Data for 2015 Mean number of decayed, missing, filled teeth at Year 8 0.97 0.60 Data for 2015 Screening and Breast screening 2 year coverage, early 50-69 yrs 73% 78% 79% intervention Data at Dec 2015 Cervical screening 3 year coverage, 25-69 yrs 69% 71% 76% Data at Mar 2016 Brief advice to quit smoking offered in primary care *Note change of 79% 78% 86% definition Data at Dec 2015 Brief advice to quit smoking offered 95% 94% to inpatients Wairarapa, Hutt Valley and Capital & Coast District Health Boards

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PUBLIC Data at Mar 2016 (Total) Cardiovascular risk assessment completion 84% 83% 92% Data at Mar 2016

Access and Ambulatory sensitive quality care hospitalisation ratio 0-4 yrs 157% 90% Data to Sep 2015 Ambulatory sensitive hospitalisation ratio 45-64 yrs 164% 91% Data to Sep 2015 Outpatient ‘did not attend’ rate 18% 15% 7% Data for 2015 Mental health Long term users of MH&A services seen by a GP in previous 12 months 84% 75% 91% Data at Dec 2015 MH&A community DNA rate 7% 8% Data at March 2016 Access to specialist MH&A services 0-19 yrs 5% 5% Data for yr to Sep 2015 Access to specialist MH&A services 20-64 yrs 9% 5% Data for yr to Sep 2015 Access to specialist MH&A services 65+ yrs 3% 1% Data for yr to Sep 2015

4.2 Performance highlights for Wairarapa DHB

∑ Breast screening – the 70 percent target of eligible women who have had a breast screening in the past two years has been met for Māori women. As of December 2015, 73 percent of Māori women had been screened for breast cancer, an increase of 7 percent from the previous quarter. Breast screening amongst Pacific women continues to achieve above target.

∑ 98 percent of Māori infants are fully immunised at 8 months of age.

∑ Mental health & addiction community DNA rate – the rate for Māori has decreased from 12 percent two years ago, to 7 percent in the most recent period.

4.3 Focus areas for improvement:

Breastfeeding Previously, breastfeeding rates have only been reported for babies enrolled with Plunket. 2014/15 data reported by MOH for all WCTO providers shows that breastfeeding rates at 3 months for Māori babies (38 percent) and babies living in deprived areas (44 percent) are much lower than target (54 percent). Note that the targets will be increased by June 2016.

To improve breastfeeding rates work has progressed to develop breastfeeding community support. Regional Public Health (RPH), Parents Centre and Whaiora have provided funding through which RPH

Wairarapa, Hutt Valley and Capital & Coast District Health Boards

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PUBLIC have been able to train two Peer Counsellor Programme Administrators (PCPAs) in Auckland with La Leche League. The Breast Friends drop-in centre has also been in action for seven months.

Breastfeeding Wairarapa received a grant from Trust House to provide a second peer counsellor training course; Compass Health and the Māori Health unit provided funding to make up the shortfall. This training is now underway; the PCPA is training a group of nine women as community breastfeeding peer counsellors. The training started early March and will continue until early May. There is a good range of ages, ethnicities and where people live in the Wairarapa. While they are training these mums as community peer counsellors, to be ‘ports of call’ in their networks, we also hope that some of them will be willing to assist with the drop-in centres.

Oral health Fifty-six percent of Māori 5 year olds in Wairarapa have dental decay (compared to only a third of non- Māori children). The enrolment rate of pre-schoolers has dropped slightly in 2015 to 73 percent for Māori children.

In the Wairarapa the oral health service is working with the two Māori health providers through the Taki Wahi Taki Ora programme focusing on 0-4 year olds. The Māori Woman’s Welfare League is providing assistance following up with families of Māori pre-schoolers who do not attend their appointments.

In the Wairarapa the new-born oral health information sessions for parents continue to be offered when baby is around 6 weeks old. This is intended as a method of engaging early with families, giving good oral health messages and ensuring families understand how to access oral health care for their children when they need it. If a family does not attend this session they are contacted again when their child is 1 year old and invited to attend the dental clinic for an examination.

Brief advice to quit smoking From 2015/16, all smokers enrolled in a primary care practice are required to be given brief advice and support to quit smoking, regardless of whether they were seen or not by a general practitioner. Previously, only smokers who were seen by a general practitioner in the last 12 months were required to be given brief advice and support to quit smoking. This requires more pro-active follow-up and advice for all people, rather than opportunistic interventions when patients are attending an appointment.

As at December 2015, 79 percent of Māori smokers and 78 percent of Pacific smokers had been followed up with advice and support to quit.

Compass Health Wairarapa is actively working with general practice in the Wairarapa to improve data collection and mapping processes and is expecting improved results in quarter three. This includes installation of the latest version of the dashboard and regular data reporting including quit rates as a motivator. The tobacco control health promoter keeps regular contact with general practices to discuss progress.

To align with World Smokefree Day this year the Wairarapa Smokefree Network has agreed to focus on smokefree dining. Compass Health will be writing to all bars, cafes and restaurants inviting them to participate in trialling smokefree dining for one month. Each facility will be provided with appropriate signage and customers will be asked to fill in a survey on their experience and go in to the draw to win a $50 dining voucher. This initiative supports people to stop smoking by making public places smokefree.

Wairarapa, Hutt Valley and Capital & Coast District Health Boards

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PUBLIC Cervical screening The national target is that 80 percent of eligible women will be screened every three years. As at March 2016, 69 percent of Māori women and 71 percent of Pacific women had received a cervical smear in the last three years. There has been little change in screening rates over a number of years.

Key to improving equity in cervical screening is the PHO cervical screening data matching reports that were released in February 2016. PHOs can access these reports electronically via the secure file transfer protocol (EFT account) which is updated monthly. These reports can be sent to practices with information on the screening status of all women enrolled with their PHO and can assist practices with recalling women. Access to these reports has also been made available to the Regional Screening Service (RSS), cervical screening. This data enables the RSS to identify and support high needs practices by assisting with follow-up and recall of National Cervical Screening Programme (NCSP) priority women overdue or not enrolled into the programme.

Prior to the PHO cervical screening data reports being matched into the National cervical screening register (NCSP) this was a manual process. These new reports will ensure timely, accurate information is available each month allowing easier follow-up of women needing to be recalled for screening. As a result this should significant impact on equity increasing coverage for NCSP priority women.

Drawing on the learnings from Health Hawkes Bay PHO, the Compass Health promotion team are currently planning an incentive programme as a strategy to improve on this measure. Women will be offered free cervical screening and also a $25 supermarket voucher. In addition a different colour envelope will be used to invite the women to the appointment. As part of this initiative Compass Health and the Māori Health unit have engaged with the Māori Women’s Welfare League and Whaiora to discuss how we can work together to follow up with those that do not respond to the invitation.

A regional coordination group meeting was held in March 2016 inputting into the regional coordination plan. There is continued engagement with Compass Health, Wairarapa and Practices.

Some key things that are happening for the National Cervical Screening Programme that will have significant impact in the future are: ∑ Changes to the primary cervical screening test – the Minister of Health, Hon Dr Jonathan Coleman, announced that the primary cervical screening test will change in 2018. The test is moving from analysing cells to detect changes that could indicate an increased risk of developing cervical cancer, to screening for HPV – the virus which causes more than 90 percent of cervical cancers.

∑ Review of screening support services – BreastScreen Aotearoa and the NCSP have completed a review of screening support services. These services help support priority women to attend breast and cervical cancer screening appointments. Priority women include Māori, Pacific (and Asian for NCSP), as well as unscreened and under-screened women.

Cardiovascular risk assessments (CVDRA) Achievement for Māori CVDRAs completed is 84 percent—slightly up from the last quarter. The Compass Health Wairarapa population health team are developing a CVDRA incentive programme similar to the cervical screening programme. The population focus will be Māori aged between 35 and 44 years. As part of this initiative Compass Health and the Māori Health Unit have engaged with the Māori Women’s Welfare League and Whaiora to discuss how we can work together to follow up with those that do not respond to the invitation.

Wairarapa, Hutt Valley and Capital & Coast District Health Boards

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PUBLIC Ambulatory sensitive hospitalisations (ASH) The ASH rate for Māori children (0-4 years) increased between years ending September 2013 and September 2015. During this period, the ASH rate for Māori children increased by 36 percent, compared to a 31 percent increase for other children. The ASH rate for Māori children is 57 percent greater than the national benchmark.

The Well Child Tamariki Ora service has recently been reviewed and providers have new targets set for 2016/17. Whaiora care for 34 percent of babies in the Wairarapa – most of these babies are Māori and Pacific and this represents a higher percentage than nationally.

There is an increasing number of Health Pathways being developed to support the standardised care of patients, and it is positive to note that cellulitis and non-acute asthma in children are in the top ten most used pathways. There is a number of primary care packages of funding linked to the health pathways. Work is underway to expand the number of packages available to treat a wider range of these conditions in primary care.

The Tihei Wairarapa Alliance Team continues to monitor childhood ASH rates closely and is concerned at the increase. Although the rates are high, the numbers are small which results in a slight increase in numbers having a substantial impact on the ASH rate.

The top three childhood ASH rates have been identified as dental extractions, respiratory conditions and skin infections. Te Hauora and Whaiora are leading an inter-sectorial Whanau Oral Health project that aims to address this and Compass Health in collaboration with the Bee Healthy Dental Service are developing a ‘lift the lip’ education session for General Practice that will be linked to obesity and other longer term health issues.

Compass Health, Whaiora, Masterton Medical and Regional Public Health are working collaboratively on the ‘childhood skin and respiratory project’ which is a Tihei Wairarapa integration project. This project includes workforce development for primary care in the areas of skin infections and childhood respiratory, free extended whānau education visits to the general practice and group whānau education sessions. To date this is proving successful with initial data showing a reduction in visits to the hospital for those that have attended the whānau education sessions.

Did Not Attends (DNAs) Although hospital outpatient DNA rates have decreased overall since 2011, rates are still twice as high for Māori and Pacific patients compared to Other.

There are between 40 and 50 appointments each month for Pacific people at Wairarapa DHB, and seven or fewer DNAs per month. Pacific nurses aim to keep this number as low as possible by addressing barriers to attendance. Pacific nurses contact patients prior to their appointments and encourage them to attend. These processes have been in place since February 2015 and are slowly improving DNA rates as we continue to remind the community during community health education on Saturdays of the importance of attending hospital appointments. A method of engaging with Pacific people by phone and connecting them with appropriate services is a proven method for improving access to specialist appointments.

Wairarapa, Hutt Valley and Capital & Coast District Health Boards

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PUBLIC Support for high need populations in the Wairarapa

Annual practice plans Compass Health has recently sent out its annual practice plan templates to all seven practices to populate for the 2016/17 year. As part of this process the practices are allocated funding for long term condition management and working with high needs populations. There is a specific Māori and Pacific section in these plans in which they identify how they will make improvements to outcomes. Following sign off of these plans the Compass Health will update the data and review the plans with the practices on a quarterly basis at practice visits.

Self-management Compass Health Wairarapa is running a Stanford Self-Management Leaders Course starting on the 5th of May. The course is run over four days and attendees are trained to run their own Stanford self- management programme. We are very pleased to have a mix of attendees on this training including consumers, providers, Māori and Pacific.

Pacific healthy lifestyles We are in the third month of our very first healthy lifestyle programme with all the four local Pacific churches, the support of the churches to the Saturday sessions has been positive with many families now joining these every Saturdays, the health sessions/educations are delivered every third Saturday by a local nurse/doctor from PHO/Clinics/Regional Public Health (RPH). We plan to evaluate this programme in June and get feedback from the community of its value to their wellbeing.

Compass Health Wairarapa attended the Pacific Healthy Lifestyle church programme on 16 April. The health education session was focused on staying well during winter and how to avoid catching the flu. The district immunisation coordinator then answered the many questions the community had supported by the Pacific Health Team from the DHB. As an outcome of this education session Compass Health, Masterton Medical and the Pacific Team returned two weeks later to run a flu vaccine outreach clinic. The clinic was a great success with 31 people being immunised including children, youth and adults. We will be returning in a month to provide the second dose for the young children and expect other adult attendees. This was a great opportunity to continue to strengthen our relationships with the community and a lot of fun was had by all.

East Masterton community led development project Connecting Communities a local community development NGO hosted The Dream Makers from Randwick Park, Manurewa, to meet with the east Masterton community, council, and providers over three days, to discuss their approach to community led development. There were various workshops and RPH, Compass Health and Whaiora all attended the provider workshop. Compass Health also attended one of the resident’s workshops which was a great opportunity to engage directly with the community about health and understand the wider determinants of health and how these affect the health of this community. We were pleased to have two local residents sign up to become Stanford self-management facilitators so they can run programmes in their community.

Wairarapa, Hutt Valley and Capital & Coast District Health Boards

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PUBLIC 5. PERFORMANCE - HUTT VALLEY DHB

5.1 Dashboard

Table 2 contains the equity monitoring performance dashboard with the most recent data available as at the end of quarter three 2015/16. A traffic light system has been applied to each result according to the key below. Two of the indicators (Oral health DMFT and ambulatory sensitive hospitalisations) are not measured as a percentage out of 100; therefore have a slightly different rating system as described in the key. A green or red arrow indicating the direction of change and impact on performance is also included. For access to specialist mental health services, once the target has been reached a judgement has not been made as to whether that is a positive or negative change.

Note that a traffic light rating has not been applied for indicators without a current target. The mental health indicators are new and targets have not yet been developed.

Table 2: Hutt Valley DHB equity monitoring performance dashboard

Domain Indicator Māori Pacific Other (or Total) Healthy Full or exclusive breastfeeding at 6 60% children weeks 50% 55% (Total) Data for 2014/15 Full or exclusive breastfeeding at 3 50% months 35% 45% (Total) Data for 2014/15 Any breastfeeding at 6 months 62% 48% 65% Data for 2014/15 (Total) Infants fully immunised at 8 months 94% 93% 92% Data at Mar 2016 (Total) Pre-school enrolment in dental services 83% 89% 104% Data for 2015 Dental examination arrears rate 11% 12% 8% Data for 2015 Percentage caries free at 5 years 49% 35% 72% Data for 2015 Mean number of decayed, missing, filled teeth at Year 8 0.87 1.33 0.54 Data for 2015 Screening and Breast screening 2 year coverage, 50- early 69 yrs 67% 65% 73% intervention Data at Dec 2015 Cervical screening 3 year coverage, 69% 70% 79% 25-69 yrs

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PUBLIC Data at Mar 2016 Brief advice to quit smoking offered in primary care *Note change of 79% 75% 80% definition Data at Dec 2015 Brief advice to quit smoking offered to inpatients – note Total is reported for 96% 97% 97% Other (Total) Data at Mar 2016 Cardiovascular risk assessment completion 85% 88% 90% Data at Mar 2016 Access and Ambulatory sensitive hospitalisation quality care ratio 0-4 yrs 132% 213% 106% Data to Sep 2015

Ambulatory sensitive hospitalisation ratio 45-64 yrs 204% 208% 93% Data to Sep 2015 Outpatient ‘did not attend’ rate 16% 15% 5% Data for 2015 Mental health Long term users of MH&A services seen by a GP in previous 12 months 73% 74% 87% Data at Dec 2015 MH&A community DNA rate 16% 11% 11% Data at March 2016 Acute inpatient unit seclusion hours per 100,000 population 7614 1425 1398 Data at 2015-16 year to date Acute inpatient 28 day readmission 20% 0% 14% rate 2015/16 year to date Access to specialist MH&A services 0- 19 yrs 5% 2% 4% Data for yr to Sep 2015 Access to specialist MH&A services 20- 64 yrs 9% 4% 4% Data for yr to Sep 2015 Access to specialist MH&A services 65+ yrs 2% 2% 2% Data for yr to Sep 2015

5.2 Performance highlights for Hutt Valley DHB

∑ Oral Health – there has been a substantial improvement in pre-school enrolment in the oral health service. For Māori, enrolment coverage in school dental services has increased 44 percent in 2014 to 83 percent in 2015. Similarly, enrolment coverage has increased for Pacific children from 51 percent in 2014 to 89 percent in 2015 which is above target.

∑ Mental health & addiction community DNA rate – the Māori rate has dropped from 22 percent (April 2015) to 14 percent in December 2015. The Pacific rate has dropped from 22 percent to 8 percent. The successful drop in DNA rates is attributable to the engagement of key Pasifika and Māori teams working with the services.

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PUBLIC ∑ Ninety seven percent of Māori and Pacific inpatients who were smokers were offered advice and support to quit during their hospital stay.

5.3 Focus areas for improvement:

Breastfeeding Previously, breastfeeding rates have only been reported for babies enrolled with Plunket. 2014/15 data reported by MOH for all WCTO providers shows that 50 percent of Māori babies and 55 percent of Pacific babies were full or exclusively breastfed at 6 weeks old. The target is for 68 percent to be fully or exclusively breastfed at that age. For 3 month olds, 35 percent of Māori and 45 percent of Pacific babies were fully or exclusively breastfed, compared to the 54 percent target. Note that the targets will be increased by June 2016. Te Rūnanganui o Te Atiawa o te Upoko o te Ika a Maui has a twelve month service agreement with Hutt Valley DHB for the Breastfeeding Support Service. Te Runanganui o Te Atiawa has undertaken a subcontract for services with a Lactation Consultant (LC) who has been supported by staff in tamariki ora and the iwi coordinator. The purpose of the LC is to offer breastfeeding support in the Hutt Valley for the Māori and Pacific population who have lower breastfeeding rates and higher health disparities. In offering this breastfeeding support service using a whakawhanaungatanga (establishing relationships) approach we hope it helps create a community that views breastfeeding as the cultural norm. Marewa Glover’s research underpins the Breastfeeding Support Service which addresses aspects that effect women’s breastfeeding experience, for example: ∑ difficulty establishing breastfeeding in the first six weeks

∑ insufficient breastfeeding support ∑ perception of inadequate milk supply ∑ returning to work (Glover, 2009).

The target population for the Breastfeeding Support Service is Māori, Pacific, teen and low income families. In the most recent quarter, Māori women (45 percent) constituted the majority of the LCs clients. Other ethnic groups seen were Pacific (21 percent), European (29 percent) and others (4 percent). This increase has happened gradually as the LC establishes herself in the community and is accessing increasing referrals from whānau members. The number of mothers aged under 20 years has also increased (18 percent). Six referrals received this quarter were outside the criteria for the Breastfeeding Support Service and referred elsewhere for appropriate support.

Oral health There are substantial disparities between Māori, Pacific and Other children in the proportion of children caries free at 5 years and mean DMFT at school year eight. The proportion of Māori and Pacific children at 5 years who are caries (decay) free is 49 percent and 35 percent, respectively. These results continue to be a disparity of greater than 20 percent for Māori and Pacific children, compared to other children.

Actions under way to increase equity include: ∑ The national newborn enrolment service initiative will continue to improve enrolment for pre- schoolers. ∑ An early intervention and prevention team works directly alongside kohanga reo and Pacific language nests to enrol and examine pre-school aged children. The team also supports healthy eating and

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PUBLIC water only policies in early childhood education (ECE), and works with the ECE providers to extend this messaging into communities. ∑ Dental therapists use fluoride varnish to provide further dental protection for children who most need it, decreasing the risk of caries in the future. ∑ Universal messaging of five key oral messages in Te Reo and Pacific languages. ∑ The oral health service supports Well Child Tamariki Ora (WCTO) nurses in “Lift the Lip” skills to ensure early referral and treatment of children of concern. ∑ Public Health nurses in primary schools are supported with resources to support individual and group work around good oral health.

∑ PHOs have been supported in “Lift the Lip” and referral pathways. ∑ Relationships with Healthy Families Lower Hutt, The Porirua Social Sector Trial, Health Future Families Trust, and Health 4 Life Project connected to Bee Healthy continue to establish ways of working together to improve oral health amongst Māori and Pacific children, families and communities.

Brief advice to quit smoking From Quarter 2 2015/16, all smokers enrolled in a primary care practice are required to be given brief advice and support to quit smoking, regardless of whether they were seen by a general practitioner. Previously, only smokers who were seen by a general practitioner were required to be given brief advice and support to quit smoking. This requires more pro-active follow-up and advice for all people, rather than opportunistic interventions when patients are attending an appointment.

As at December 2015, 79 percent of Māori smokers and 75 percent of Pacific smokers had been followed up with advice and support to quit.

Te Awakairangi Health Network has partnerships with Aukati Kai Paipa in three practices to offer onsite cessation services and Pacific Smoking Cessation Services in one practice. This has produced positive results at HUCHS, Whai Oranga and Naenae Medical Centres.

In 2016/17 a new service for young pregnant Māori women or women with young children up to five years of age will commence at Kokiri Marae to help support women to stop smoking. The service will work alongside other health and social services provided by the Marae.

Cervical screening The national target is that 80 percent of eligible women will be screened every three years. As at March 2016, 69 percent of Māori women and 70 percent of Pacific women had received a cervical smear in the last three years. There has been little change in screening rates over a number of years.

Key to improving equity in cervical screening is the PHO Cervical Screening Data Matching Reports that were released in February 2016. PHOs can access these reports electronically via the secure file transfer protocol (EFT account) which is updated monthly. These reports can be sent to practices with information on the screening status of all women enrolled with their PHO and can assist practices with recalling women. Access to these reports has also been made available to the Regional Screening Service (RSS), Cervical Screening. This data enables the RSS to identify and support high needs practices by assisting with follow-up and recall of NCSP priority women overdue or not enrolled into the programme.

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PUBLIC Prior to the PHO Cervical Screening Data reports being matched into the National Cervical Screening Register this was a manual process. These new reports will ensure timely, accurate information is available each month allowing easier follow-up of women needing to be recalled for screening. As a result this should significant impact on equity increasing coverage for NCSP priority women.

Combined Priority Women Screening Days were held on Saturday 13 February 2016 and 9 April 2016 at BreastScreen Central (Hutt Hospital). This is a collaborative project involving Regional Screening Services, Mana Wahine Incorporated, Te Awakairangi Health Network and Te Runanga o Taranaki Whanui. Key cervical messages have been promoted at Orongomai Marae health day, Te Ra o Te Raukura, Tumeke Taita festival, and the national NZ softball tournament.

Funding support has been provided to services for NCSP priority women and for ‘Free Smears’ for NCSP priority women in the Hutt Valley. There is continued engagement with all practices for Te Awakairangi Health Network and Cosine – Ropata Medical. A Regional Co-ordination Group meeting was held in March 2016 inputting into the Regional Co-ordination Plan.

Some key things that are happening for the National Cervical Screening Programme that will have significant impact in the future are: ∑ Changes to the Primary Cervical Screening Test – The Minister of Health, Dr Jonathan Coleman, announced that the primary cervical screening test will change in 2018. The test is moving from analysing cells to detect changes that could indicate an increased risk of developing cervical cancer, to screening for HPV – the virus which causes more than 90 percent of cervical cancers. ∑ Review of Screening Support Services – BreastScreen Aotearoa and the NCSP have completed a review of screening support services. These services help support priority women to attend breast and cervical cancer screening appointments. Priority women include Māori, Pacific (and Asian for NCSP), as well as unscreened and under-screened women.

Ambulatory sensitive hospitalisations The ASH rate for Māori and Pacific children (0-4 years) decreased between years ending September 2013 and September 2015. The ASH rates for Māori and Pacific children decreased by 27 percent and 8 percent, respectively. However, the ASH rate for Pacific children remains twice the national benchmark. The ASH rate for Māori adults (45-64 years) has continued to increase between the years ending September 2011 and September 2015. The ASH rate for Pacific adults decreased by 22 percent between September 2014 and September 2015, and continues a decreasing trend. However, the ASH rate for Māori and Pacific adults in remains twice the national benchmark, whereas ASH rates for other ethnicities are below the national benchmark.

The Well Child Tamariki Ora service has recently been reviewed and providers have new targets set for 2016/17. Pacific Health Service and Waiwhetu Medical Centre care for 6 percent and 14 percent respectively of babies in the Hutt Valley. New targets have been set for 2016/17 to increase the coverage for Māori and Pacific babies, which is expected to help improve equity of outcomes for young children.

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PUBLIC To reduce ASH and the ethnic disparities that exist in the Hutt Valley, Hutt INC is progressing work through the Acute Demand, Child Health and Long Term Conditions Networks. The key areas of work being progressed relevant to reducing ASH and reducing ethnic inequalities are addressed in the following sections.

∑ Integrated winter plan for 16/17: Multiple activities are being progressed across the system, which are aiming to address the increase in demand over the winter period. These work at different levels to keep the community well to and improve patient flow through the system. Key projects that aim to reduce unplanned care across the system including avoidable hospitalisations in ED attendances include: - Proactive follow up in primary care for patients with repeat respiratory related hospitalisations over the last 12 months. - Improvements to GP access to acute paediatric clinics (for children who require acute specialist assessment and treatment but may not require hospitalisation). - Work to ensure same day acute appointments are available in general practices in the Hutt Valley. - Communications plan including where to access services (dial your doctor messaging) and health literacy information on how to stay well over winter. - Flu vaccination coverage for workforce and at risk patients

∑ Asthma Quality Improvement Programme: A quality improvement programme to improve the management of childhood asthma in primary care has been developed and is being implemented by Te Awakairangi in May 2016. This has a focus on reducing variation and ethnic disparities in the management of asthma across general practices in the Hutt Valley. The implementation of this programme includes CME and nurse education sessions using the revised asthma health pathway, practice specific education sessions including feedback on practice performance and targeted work with high priority practices to facilitate quality improvement. High priority practices have been selected based on higher reliever: preventer-inhaler dispensing ratios, asthma related ED attendances and hospitalisations.

∑ Respiratory Patient Journey Project: This project is evaluating and identifying opportunities for improving the model of care across the system for respiratory patients. This work will inform service developments to reconfigure respiratory services in 16/17. This work has been prioritised due to the impact respiratory illness has on the Hutt Valley health system and population (contributes to the top five ASH conditions and ethnic disparities).

∑ Long term conditions programme in primary care: During 2016/17 Te Awakairangi Health Network has been developing a long term condition management model in collaboration with practices. The Diabetes Care and Improvement Programme (DCIP) is transitioning from a fee for service model to a new bulk funding model based on practice plans for long term conditions. To oversee the new DCIP it has been agreed to establish a diabetes clinical governance group which will meet in June 2016.

∑ Integration initiatives for 16/17: Currently, there is work looking at improving primary and secondary clinical integration. This work includes direct phone call access to acute specialist advice, electronic referral for specialist advice, shared care planning and case collaboration. This work will help primary care to manage patients in the community, including in the management of ASH conditions in high needs.

Did not attends (DNAs)

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PUBLIC DNA rates for Māori and Pacific people have substantially reduced from previously high levels in 2013, although the Māori rate increased slightly in 2015.

In February 2014, as part of the 99 percent attendance initiative, the Pacific Directorate commenced work to improve attendance at HVDHB outpatient clinics. This work was focused in nine priority clinics (audiology, ENT, paediatrics, fractures, cardiology, colposcopy, gynaecology, and rheumatology). Community radio messaging was used to highlight the importance of attending hospital appointments. Later in 2014, the Directorate’s work moved to include all outpatient appointments for children under 15 years of age (now including a large number of appointments with Fracture Clinic and Plastics).

This work is performed by Pacific nurses who use their knowledge and relationships within the DHB system to contact patients and/or their families using Pacific languages to encourage them to attend or linking them with other agencies such as the Pacific Health Service as needed.

Compared to the 2012/13 baseline, Pacific DNA rates are now most often at or below the baseline demonstrating a clear reduction in non-attendance, sustained over more than 12 months. Specifically this internal data demonstrates a drop in overall Pacific DNA rate from 16 percent in 2012/13 to 13 percent in 2014/15. Compared to the 12 month period prior to this initiative, 350 additional appointments were attended by Pacific people during the following 12 month period. One hundred of these 350 appointments were for children under 15 years of age.

To improve the DNA rate of Māori in Hutt Valley DHB, a targeted effort is required in key vulnerable areas. Four priority clinics were identified in which these efforts have been focused: Audiology, ENT, Paediatrics and Diabetes (doctor clinics only). From February 2016, Diabetes has been replaced by Plastics as a priority clinic. To achieve reductions in the DNA rates, engagement with patients and whānau is required. Processes to monitor non-attendance have been introduced with reasons for non- attendance being confirmed. Progress in this area is monitored monthly.

There are more than 1500 appointments per year for Māori children in the Paediatrics clinic. There continues to be attention in this clinic to reduce the DNA rates. Compared to December 2014, internal data shows there has been an 8 percent reduction in the DNA rate from 22 percent to 14 percent. The ENT clinic has achieved 99 percent attendance for Māori patients in June 2015 and again in December 2015. In Audiology, there continues to be a gradual decline in DNA rates. There was a 6 percent decrease in DNA rates between January 2015 and December 2015 from 15 percent to 9 percent.

Hutt Valley will continue with current actions and plans to reduce ethnic disparities. Work is required with the challenges to improve the system and continued engagement with whānau.

Mental health The Mental Health, Addictions & Intellectual Disability (MHAID) 3 DHB Seclusion minimisation group, led by Toni Dal Din, Director of Nursing, undertake regular reviews as a means of placing focus on lowering the rates of seclusion, which remain higher for Māori. Note that the definition of seclusion hours is different in the Hutt unit due to its design, which is why overall hours are much higher than for Capital & Coast DHB.

With regard to continuing treatment orders and inpatient readmission rates, there is a plan to place more focus in this area which will be reported in future equity monitoring reports.

Dental health checks for prisoners going into forensic services have shown that this issue is significant and normally under treated when the impact of tooth decay can create major health problems.

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PUBLIC 6. PERFORMANCE – CAPITAL & COAST DHB

6.1 Dashboard

Table 3 contains the equity monitoring performance dashboard with the most recent data available as at the end of Quarter Three 2015/16. A traffic light system has been applied to each result according to the key below. Two of the indicators (Oral health DMFT and Ambulatory sensitive hospitalisations) are not measured as a percentage out of 100; therefore have a slightly different rating system as described in the key. A green or red arrow indicating the direction of change and impact on performance is also included. For access to specialist mental health services, once the target has been reached a judgement has not been made as to whether that is a positive or negative change.

Note that a traffic light rating has not been applied for indicators without a current target. The mental health indicators are new and targets have not yet been developed.

Table 3: Capital & Coast DHB equity monitoring performance dashboard

Domain Indicator Māori Pacific Other (or Total) Healthy Full or exclusive breastfeeding at 6 69% children weeks 59% 51% (Total) Data for 2014/15 Full or exclusive breastfeeding at 3 62% months 46% 43% (Total) Data for 2014/15 Any breastfeeding at 6 months 72% 53% 60% Data for 2014/15 (Total) Infants fully immunised at 8 months 93% 87% 93% Data at Mar 2016 (Total) Pre-school enrolment in dental services 68% 87% 103% Data for 2015 Dental examination arrears rate 12% 12% 13% Data for 2015 Percentage caries free at 5 years 51% 41% 77% Data for 2015 Mean number of decayed, missing, filled teeth at Year 8 0.76 1.12 0.47 Data for 2015 Screening and Breast screening 2 year coverage, 50- early 69 yrs 64% 64% 69% intervention Data at Dec 2015 Cervical screening 3 year coverage, 63% 67% 85%

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PUBLIC 25-69 yrs Data at Mar 2016 Brief advice to quit smoking offered in primary care *Note change of 81% 75% 83% definition Data at Dec 2015 Brief advice to quit smoking offered to 93% inpatients 91% 92% (Total) Data at Mar 2016 Cardiovascular risk assessment completion 87% 89% 91% Data at Mar 2016

Access and Ambulatory sensitive hospitalisation quality care ratio 0-4 yrs 115% 199% 76% Data to Sep 2015 Ambulatory sensitive hospitalisation ratio 45-64 yrs 145% 193% 68% Data to Sep 2015 Outpatient ‘did not attend’ rate 12% 11% 4% Data for 2015 Mental health Long term users of MH&A services seen by a GP in previous 12 months 69% 76% 84% Data at Dec 2015 MH&A community DNA rate 10% 8% 8% Data at March 2016 Acute inpatient unit seclusion hours per 100,000 population 2635 376 209 Data at 2015-16 year to date Acute inpatient 28 day readmission rate 10% 21% 12% Data 2015/16 year to date Access to specialist MH&A services 0- 19 yrs 5% 3% 4% Data for yr to Sep 2015 Access to specialist MH&A services 20- 64 yrs 7% 4% 3% Data for yr to Sep 2015 Access to specialist MH&A services 65+ yrs 2% 1% 1% Data for yr to Sep 2015

6.2 Performance highlights for Capital & Coast DHB

∑ Oral Health – there has been a substantial improvement in pre-school enrolment in the oral health service. For Māori, enrolment coverage in school dental services has increased 45 percent in 2014 to 68 percent in 2015. Similarly, enrolment coverage has increased for Pacific children from 65 percent in 2014 to 87 percent in 2015 which is above target.

∑ The ASH rate for Māori children (0-4 years) has continued to decrease between years ending September 2014 and September 2015. While the ASH rate for Māori children increased by 15 percent over the last five years, the ASH rate decreased by 4 percent between 2014 and 2015. The

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PUBLIC ASH rate for Māori children is 15 percent higher than the national benchmark. Between the years ending September 2014 and September 2015, the ASH rate for Māori adults (45-64 years) decreased by 21 percent.

6.3 Focus areas for improvement:

Breastfeeding Previously, breastfeeding rates have only been reported for babies enrolled with Plunket. 2014/15 data reported by MOH for all WCTO providers shows that 59 percent of Māori babies and 51 percent of Pacific babies were full or exclusively breastfed at 6 weeks old. The target is for 68 percent to be fully or exclusively breastfed at that age. For 3 month olds, 46 percent of Māori and 43 percent of Pacific babies were fully or exclusively breastfed, compared to the 54 percent target. Note that the targets will be increased by June 2016. To improve breastfeeding rates in Capital and Coast DHB, a Community Breastfeeding Education (half) Day for Community Health Workers was conducted. The programme aimed to increase health workers knowledge and skills in supporting breastfeeding mothers. Topics covered during the Education Day included: ∑ Breastfeeding and Maternal Mental Health ∑ Breastfeeding for Māori Women ∑ Breastfeeding Scenarios /Case Studies ∑ Baby Friendly Community Initiative (BFCI) and WHO Code

∑ Pacific Breastfeeding Woman with Diabetes – a Case Study ∑ Panel: Peer Counsellor Role

Oral health The dental examination arrears rates have substantially improved in the last two years however as the arrears rates increased slightly in 2015 and we are following this indicator closely.

Fifty-one percent of Māori 5 year olds and 41 percent of Pacific 5 year olds are caries (decay) free compared with the target of 69% and there is much room for improvement.

Actions underway to increase equity include: ∑ Further data-match in CCDHB area together with Primary Health Organisations to increase enrolment of pre-school children as per CCDHB Māori Health District Plan 2016-17. ∑ The national newborn enrolment service initiative will continue to improve enrolment for pre- schoolers. ∑ An early intervention and prevention team works directly alongside kohanga reo and pacific language nests to enrol and examine pre-school children. The team also supports healthy eating and water only policies in early childhood education (ECE), and works with the ECE providers to extend this messaging into communities. ∑ Dental therapists use fluoride varnish to provide further dental protection for children who most need it, decreasing the risk of caries in the future. ∑ Universal messaging of five key oral messages in Te Reo and pacific languages.

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PUBLIC ∑ The oral health service supports well child tamariki ora (WCTO) nurses in “Lift the Lip” skills to ensure early referral and treatment of children of concern. ∑ Public health nurses in primary schools are supported with resources to support individual and group work around good oral health. ∑ Primary health organisations have been supported in “Lift the Lip” and referral pathways. ∑ Relationships with Healthy Families Lower Hutt, the Porirua Social Sector Trial, Health Future Families Trust, and Health 4 Life project connected to Bee Healthy to establish ways of working together to improve oral health amongst Māori and Pacific children, families and communities.

Cervical screening The national target is that 80 percent of eligible women will be screened every three years. As at March 2016, 63 percent of Māori women and 67 percent of Pacific women had received a cervical smear in the last three years. There has been little change in screening rates over a number of years.

Key to improving equity in cervical screening is the PHO Cervical Screening Data Matching Reports that were released in February 2016. PHOs can access these reports electronically via the secure file transfer protocol (EFT account) which is updated monthly. These reports can be sent to practices with information on the screening status of all women enrolled with their PHO and can assist practices with recalling women. Access to these reports has also been made available to the Regional Screening Service (RSS), cervical screening. This data enables the RSS to identify and support high needs practices by assisting with follow-up and recall of NCSP priority women overdue or not enrolled into the programme.

Prior to the PHO cervical screening data reports being matched into the National Cervical Screening Register this was a manual process. These new reports will ensure timely, accurate information is available each month allowing easier follow-up of women needing to be recalled for screening. As a result this should significant impact on equity increasing coverage for NCSP priority women.

Regional screening services, recruitment and retention advisors and register staff are working with Waitangirua Health Centre phoning NCSP priority women overdue for screening daytime and after hours for invitation to ‘free smear clinics’. Support and transport to services is offered. Women with no phone contact will be home visited.

Combined priority women screening days have been held on Saturdays and a new site is being scoped for a cervical smear clinic at Kenepuru Hospital (to be held 21 May 2016). Regional Screening Services is funding some free smears for NCSP priority women in Capital & Coast.

To increase recruitment and retention of women in the NCSP, Regional Screening Service has run promotions at the Wellington City Council Pasifika Festival, Waitangirua Summer Festival, Wellington Pacific Cancer Support Group, Hongoeka Summer Festival, Creekfest Porirua, Whakarongotai Marae, Waikanae, Newtown Festival, and WINZ Porirua. Key cervical screening messages have also been promoted on Capital Samoa Radio and Te Upoko o Te Ika Māori Radio.

Brief advice to quit smoking From quarter two 2015/16, all smokers enrolled in a primary care practice are required to be given brief advice and support to quit smoking, regardless of whether they were seen by a general practitioner. Previously, only smokers who were seen by a general practitioner were required to be given brief advice

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PUBLIC and support to quit smoking. This requires more pro-active follow-up and advice for all people, rather than opportunistic interventions when patients are attending an appointment.

As at December 2015, 81 percent of Māori smokers and 75 percent of Pacific smokers had been followed up with advice and support to quit.

The DHB is funding a smoking cessation clinical champion though Compass Health to support all general practices in CCDHB to improve cessation support. The clinical champion has developed an action plan of activities to support the achievement of the health target by the end of quarter four, including implementation of a new one stop shop performance report that shows smoking status coded, link to missing patient list of those still to be coded, brief advice numbers to complete in the quarter, links to missing patient lists due advice in the quarter, quit rate by practice, smokers given cessation support and links to a missing patient list for those due advice in the quarter who have not presented to general practice.

Karori Medical Centre reports that having a smoking cessation champion in the practice has made a great difference in that patients are aware they can access support close to home, and this support can be face-to-face, on the phone, via email or text.

GPs and nurses can refer patients to the Ora Toa Quit Smoking Service for face to face support via Medtech. This referral pathway to the Quit Smoking service on Medtech has been updated to be user friendly and discussed at practice meetings. This pathway ensures a robust feedback process to staff so on-going conversations and support from the health professional to the patient can be continued during a clinical intervention.

The proportion of Māori and Pacific smokers who have been offered advice and support to quit smoking whilst an inpatient in hospital has decreased. For Māori and Pacific in patients there has been a 1 percent and 4 percent decrease, respectively, in brief advice and support offered to quit smoking. The 90 percent target has not been met for this indicator.

In the hospital, monthly steering group meetings are attended by all directorates. High turnover areas such as ED, Delivery Suite and Surgical Admissions still present challenges. Daily walk rounds of inpatient areas are undertaken identifying where records need to be updated.

Ambulatory sensitive hospitalisations The ASH rate for Pacific children (0-4 years) increased between years ending September 2014 and September 2015. Since 2012, the ASH rate for Pacific children has increased by 16 percent. The ASH rate for Pacific children is twice as high as the national benchmark. Between the years ending September 2014 and September 2015, the ASH rate for Pacific adults (45-64 years) increased by 12 percent and was 1.9 times higher than the national benchmark.

The Well Child Tamariki Ora service has recently been reviewed and providers have new targets set for 2016/17. WCTO services are provided by Ora Toa PHO, Maraeroa and Hora te Pai who provide services for 10 percent, 2 percent and 1 percent of babies respectively. New targets have been set to improve the coverage of Māori and Pacific babies for 2016/17 which is expected to help improve equity of outcomes for young children.

The CCDHB Integrated Care Collaborative (ICC) is leading a number of initiatives to support the improvement in ASH outcomes for the population and the targeted population groups including:

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PUBLIC ∑ Diabetes care improvement plan which delivers a range integrated services for the population including a population based approach to diabetes management in primary care, specialist case collaboration and diabetes nurses partnered to practices. These service components have been targeted to the priority Māori and pacific population which should lead to improvements for these cohorts.

∑ The development of a self-management framework to empower the population with long term conditions to self-manage and as a consequence keep well in the community. The project will look to engage the general population and clinicians in self-management as well as the development of self- management support programmes across the DHB.

∑ There is an increasing number of Health Pathways being developed to support the standardised care of patients, and it is positive to note that cellulitis and non-acute asthma in children are in the top 10 most used pathways. There is a number of primary care packages of funding linked to the health pathways, and over the period from March 2015 to March 2016 there have been 267 cellulitis and deep vein thrombosis treatments delivered in primary care. Work is underway to expand the number of packages available to treat a wider range of these conditions in primary care, as well as expand the role of the ambulance urgent community care service that will enable patients who are acutely unwell to be better managed in the community.

∑ The health care home (HCH) initiative is a team based health care delivery model that provides comprehensive and continuous health and social care with the goal of supporting individuals to obtaining maximised health outcomes through better preventative, proactive and acute care of the population. Selected Primary Care Practices are being supported to transform into this new service delivery model and community services are working to better integrate with these health care homes teams. The first tranche HCH cohort includes 16 percent Māori and 13 percent Pacific, so improvements in ASH are expected for these populations in the long term.

∑ The Porirua Social Sector Trial (SST) has a key focus on the improvement of ASH rates for the Porirua area. There are a number of initiatives under the trial including:

∑ The SST has developed five key health messages (get sore throats checked, clean and cover cuts, wash and dry hands, brush teeth, use 0800 611116 Healthline) and these continue to be the focus of health promotion events sponsored by the SST. The SST has used the 5 key oral health messages postcards at community health events. ∑ The SST has promoted access to oral health for 12-17 year olds through media articles produced to promote free dental care for under 18 year olds in the local Kapi Mana newspaper. Promotion of free dental care occurred at the Creek Fest 2016 along with the making of a video clip of young people promoting good oral care. This is being finalised and will be distributed during April/May. ∑ All of Government Contracts (AOG) for consumable and hygiene products in primary schools: The SST has given the 30 primary schools across Porirua the option of joining the AOG consumable contract or receiving a grant to contribute towards liquid soap and other hygiene products for their school. To date, three schools belong to the AOG programme and 18 schools have opted for the grant. All schools appreciate the focus and targeted resource for soap and hygiene products for the children. ∑ Affordable Medication: The flexible fund to improve access to medication at 3 pharmacies continues. ∑ The SST has a work stream Identifying young people not enrolled in primary care. Discussions with the PHOs are continuing around how the SST/PHO can identify those young people enrolled in other services who may not be enrolled in primary care. ∑ On release from prison, people are linked to primary care. Work & Income collaboration: The ‘Transition to primary health care on release from Prison' report has been accepted and implementation is underway. This is currently being tested with Rimutaka and Arohata prisons,

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PUBLIC for those people coming to live in Porirua. The process flow chart has been refined to include drop in ex-inmates into medical practices and Probation Services have joined the conversation. ∑ Re-directions Increase in the number of Porirua Work & Income clients having some of their benefit re-directed to medical centres or pharmacies increased from 20 in July 2015 to 50 January 2016.

∑ Other initiatives that will provide enablers for primary care to help people keep well in the community include the easy access to the hospital health record, support for patients to access their own health information via the patient portal, the development of a shared care plan and the ongoing ability for hospital clinicians to access patients summary primary health care record.

Mental health

In comparison to Wairarapa and Hutt Valley DHBs, the DNA rate for the mental health and addictions community has remained stable. However, there has been no sustained reduction in the DNA rates for Māori, Pacific or Other in this community.

There remains a disparity of 15 percent and 8 percent for Māori and Pacific to achieve equity with Other, who are long term users of mental health and addictions services and have been seen by a GP in the previous 12 months.

Ratonga Rua Hospital provides a weekly GP and health nurse. What they are discovering is the consistent issue of weight gain due to medication as a health issue for patients.

The Mental Health, Addictions & Intellectual Disability (MHAID) 3DHB seclusion minimisation group, led by their Director of Nursing, undertake regular reviews as a means of placing focus on lowering the rates of seclusion, which are steadily coming down for Pasifika and Māori.

With regard to continuing treatment orders and inpatient readmission rates, there is a plan to place more focus in this area which will be reported in future equity monitoring reports.

Charts for all indicators in the equity monitoring framework, showing trends over time, are included in Appendix 1.

Wairarapa, Hutt Valley and Capital & Coast District Health Boards

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PUBLIC

CPHAC-DSAC INFORMATION PAPER

Date: 22 April 2016

Author Wayne Skipage GM – Strategy, Planning and Intelligence

Endorsed by Sandra Williams Acting Director – Service Integration and Development Unit

Subject Health System Planning update

RECOMMENDATION

It is recommended that the CPHAC-DSAC Committee a. Note the update

1. PURPOSE

The purpose of this paper is to provide an update on SIDU’s progress made in respect to the Health System Planning work commissioned by the three DHBs.

2. BACKGROUND

Our Health System Planning work began nearly two years ago with the intention of creating a vision for healthcare across the 3 DHBs that would lead to a sustainable system of health services delivery in 2030.

The process has involved considerable research, analysis and engagement, together with the development of a suite of planning tools (including Active GIS impact mapping, System Dynamic Modelling and Economic Impact Modelling) which have significantly enhanced SIDU’s ability to undertake whole of system planning in a complex and continually adapting web of service delivery.

Our focus has been refined to create 3 local health system plans - one for each of the DHBs. These very much explore the integrative opportunities within each locality, but will also outline where it makes sense for ongoing collaboration and potential consolidation to occur across the sub-region.

The draft documents are due to be completed by 30 June 2016 and will provide a vision of what healthcare could look like by 2030. The drafts will contain a series of future state options for Boards to consider and choose for their populations. These decisions will then be consolidated into final draft health system frameworks and a community engagement process will begin.

3. THE APPROACH

The Health System Plan is being developed with a strong focus around the four settings of care and the macro models of care for the major service users. This analysis forms the basis of the health system plans. The focus in the health system plan is in addressing the following trends:

Capital & Coast District Health Board

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PUBLIC ∑ Decline in the younger population in Hutt Valley and Wairarapa and a substantial increase in the older and particularly the older population in all three DHBs, being realised in 2033; ∑ Community based providers more formally linked to the broader health system and the integration of health and social services to prevent avoidable healthcare demand and support people to participate in society; ∑ Focus on health promotion and public health approaches alongside health service development to support the prevention of avoidable ; ∑ More use of electronic communications, personal monitoring devices and mobile devices with patients and their families in their own homes; ∑ Primary care involved in a much wider scope of services including more preventative services and self- management; ∑ Technology and systems used to ‘leverage scarce expert skills’ ensuring specialists services can be accessed without necessarily requiring specialist services to be available locally; and ∑ Consolidation of some specialty services and careful consideration of what hospital services can be provided at each setting and where specialist clinicians leading cross-DHB and cross-regional services.

4. CURRENT WORK

The project streams underway include the draft macro-models of care across the eight major service user groups and the exploring of the roles of the four settings of care including community development (localities), primary healthcare (Healthcare Homes), district hospitals (Kenepuru, Hutt Valley and Wairarapa) and complex care services (Wellington Hospital) in meeting the health needs of the people of the three DHBs.

The development of the draft models of care, and workforce models which form the basis of the analysis of options within and across each DHB are progressing well. The second round of workshops commences this week (April) to explore the opportunities in these models of care.

Specific modelling of the economic impact is structured to focus on the movement of activity across the settings and identifying what is clinically and financial sustainable. This involves the evaluation of changes to levels in activity across each settings and the likelihood of greater clinical and financial sustainability. This also includes the consideration of complex services at Wellington Hospital.

A second round of multidisciplinary workshops have been completed across the three organisations and the Strategy Planning and Intelligence team are consolidating that input into a series of system views and process maps to go to a final stage of workshops in May. It should be noted that input through the workshops and through a range of other meetings has been secured from the broadest mix of clinicians and manager throughout the healthcare system.

5. PROGRESS

There is still a significant amount of work to be completed to pull together the amount of input and analysis into the three documents; however the Strategy, Planning and Intelligence Team are on track to complete three Health System Visions and the accompanying options by 30 June for presentation to Boards in August 2016. A detailed presentation of the draft results from the work will be available for the July CPHAC-DSAC meeting.

Capital & Coast District Health Board

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PUBLIC

CPHAC UPDATE PAPER

Date: 29 April 2016

Authors Dr Jill McKenzie, Clinical Head of Department, Regional Public Health Peter Gush, Service Manager, Regional Public Health

Endorsed By Warrick Frater, Interim Chief Operating Officer, Hutt Valley DHB

Subject Regional Public Health Update

RECOMMENDATION

It is recommended that CPHAC: a) Note the contents of this report, which outlines key recent public health activities in the three DHBs.

APPENDIX:

APRIL 2016 EDITION OF PUBLIC HEALTH POST

This update was prepared on 29 April 2016 and does not set out to be a comprehensive report of all Regional Public Health (RPH) activity, rather a snapshot of topical matters. Information on other areas of activity is available if CPHAC members desire.

1. Overall focus for Health Promotion during 2015/16 and 2016/17

Long term conditions (LTCs) include cardiovascular disease, chronic respiratory disease, diabetes, cancer, mental illness, and musculoskeletal disorders, and share a common set of risk factors (or causes) and these risk factors have a common set of determinants (causes of the causes).

RPH has work programmes targeted at the major causes of ill health (tobacco use, harmful use of alcohol, poor nutrition and physical inactivity, as well as obesity), and some of the “causes of the causes” or social determinants of health (poverty, housing, income, employment, education, the physical environment and inequity).

The prevalence of childhood obesity is of particular concern as it is associated with long term health problems. The Government’s Childhood Obesity Plan sets out a series of actions to tackle this problem. RPH is working to make a population health contribution to this effort as detailed in the CPHAC-DSAC discussion paper dated 18 March 2016. Success will require a concerted and coordinated effort across the health, education and social sectors. RPH therefore works with many stakeholders across the health, education and social sectors.

2. Nutrition and Physical Activity/Obesity

To achieve sustained reductions in the increase of preventable long term conditions (LTCs) and to create lasting improvements in the health and wellbeing of people and communities, RPH promotes not only healthier lifestyles but also works to improve the environments where people live, work and play. We work in particular with communities that have the highest proportion of Māori, Pasifika and children and their whānau.

Wairarapa, Hutt Valley and Capital & Coast District Health Board

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PUBLIC Our key work areas include:

∑ Working in a range of settings such as DHBs, councils and education settings to support the development of healthy food and beverage guidelines and policies ∑ Improving the availability of healthy food through fruit and vegetable cooperatives, in collaboration with Wesley Community Action ∑ Working with interagency networks such as Healthy Families NZ Lower Hutt, local councils, obesity networks, active transport ∑ Facilitating the implementation of the Wairarapa Breastfeeding Priority Plan 2016-2019 ∑ Producing quarterly food and nutrition newsletters

Fruit and Vegetable Cooperatives Since 2014 RPH has worked alongside Wesley Community Action to establish fruit and vegetable cooperatives throughout the Hutt Valley and Wellington. The cooperatives are based on a model developed by Community and Public Health, Canterbury District Health Board. The intended purpose is to improve affordability and accessibility of fruit and vegetables for the residents of high need communities. As of April 2016 there are packing hubs running in seven locations (East Porirua, Titahi Bay, Miramar-Strathmore, Wainuiomata, Waiwhetu, Naenae, Upper Hutt-Timberlea) with Pomare-Taita coming on board soon (there is currently a distribution hub based in Pomare). One thousand orders are filled each week across all the hubs.

Water in Schools A “water in schools” survey is being sent to all primary schools across the sub-region. This is asking schools if they currently have a water only policy or would like some assistance to help implement such a policy in their schools.

Public Health Nurses are in all Decile 1-3 schools weekly and Decile 4-6 schools fortnightly and they have very good relationships with the schools to assist with health education and implementation of these policies. Public Health Advisors can assist with writing the school policies and providing health education.

3. Community Action Neighbourhood (CAN) approach

In the past our work in communities has involved working mainly with providers and with a focus on linking residents to available services and interventions. While this continues, the updated Community Action approach has more emphasis on interacting with residents to identify their priorities and then work together with other providers to respond for greater collective impact. The Neighbourhood Approach in identified geographic communities includes aspects more akin to a classic Community Development approach. The key elements of a community development approach are engaging and listening to communities and community as leaders. This requires a bottom-up approach giving communities leadership and allowing them to have more control. This links with the health promotion frameworks of participation and community capacity with the key principle of the community in leadership.

RPH is using the CAN approach in two specific communities: Titahi Bay and Wainuiomata. The principles on which the approach is based are:

o Empowerment of people and communities o Assets and strengths based o Responsive to resident’s needs and aspirations o Enhanced support of residents’ voices being heard in policy development o Proactive in addressing tobacco and obesity issues o Long term commitment o Addressing the determinants of health o Reducing inequalities

In practice, this involves the accommodation of community empowerment in core public health programmes to reduce the harm done by tobacco and obesity. It also means listening to the strengths of the community

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PUBLIC and supporting them to deal with problems of importance to them, such as harm from alcohol and mental wellbeing.

A planning and evaluation framework is being developed and connections to the community are being made.

4. Hapaitia Wairarapa

In Wairarapa, RPH is taking a lead role in a community led resilience initiative. ‘Hapaitia Wairarapa’ is a network of agencies, providers, community networks and coalitions who are committed to improve the wellbeing of Wairarapa’s children. Mike Kawana, Cultural Advisor Rangitāne o Wairarapa Inc has given the initiative the name of Hapaitia Wairarapa. In this context Hapaitia translates to taking charge of one’s destiny and moving forward with confidence.

The network has selected three community indicators to measure their progress:

i. Increase in the rate of enrolment in Early Childhood Education ii. Decrease in the rate of substantiated Child Abuse investigations iii. Decrease in the incidence of Ambulatory Sensitive Hospitalisations

5. Alcohol Harm

RPH’s work in this area is aimed at reducing the levels of harm from alcohol use in the greater Wellington region, with a focus on groups who suffer harm disproportionately, including those with low socioeconomic status, Māori, Pasifika and young people. Our activity is divided into three main areas: supply control, demand reduction and problem limitation.

There are 1500 individual liquor license holders across the eight territorial authorities in the greater Wellington region. Alcohol harm is commonly at its greatest in areas of high outlet density. Density issues are primarily of two different types: those in central city areas catering for entertainment, and residential areas with high numbers of off licenses. Both are of concern to RPH.

The approaches taken include a combination of regulatory and health promoting approaches. We work with police, councils and community agencies to understand and address the issues driving the harmful consumption of alcohol use. Communities are a key partner, and we support them to play an active part in preventing alcohol related harm, for example through submissions on liquor licence applications within their local area. We use alcohol related health data (for example from Wellington Emergency Department) along with other relevant information to influence the decision making of other parties at a local and regional level.

Liquor license activity In the period 1 October 2015 to 31 March 2016 RPH reported on a total of 323 liquor licence applications for clubs, cafes, restaurants, bars, supermarkets, grocery stores and bottle stores throughout the region. Of those, we opposed 40 on first inquiry, seeking either changes to the licence conditions or requesting that the licence not be granted. We withdrew four of the oppositions following the applicant making amendments to their application to meet the required conditions. Six of the applications for a licence were declined. Nine applications have been granted, most with additional conditions. The remaining applications are still in progress or we are awaiting the hearing result.

Our work includes ensuring alcohol displays meet the legislative requirements; off license hours are reducing; and reducing the number of convenience stores that sell alcohol. Pivotal to the success of hearings around these issues is current data from alcohol related presentations to Wellington Emergency Department and new data looking at non-injury hospitilisations wholly attributable to alcohol, for the greater Wellington region.

Wairarapa, Hutt Valley and Capital & Coast District Health Board

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PUBLIC Advances in the ‘app’ world An iPad ‘app’ is being used in the CCDHB Emergency Department to screen patients and ascertain the need for further assessment in regards to their alcohol use, depression, smoking and safety. Called Rataora, it uses clinical assessment tools via the screen interface. It has proven easy to use, beneficial and it is free on iTunes and available for iPhones soon - search for Rataora.

The alcohol staff at RPH have been working with the ‘app’ developer Don Smith (a research associate at the Department of Psychological Medicine at Otago University) using the data collected to assess alcohol harm levels.

6. Smokefree – Initiatives with Councils

RPH has been working with Wellington City Council (WCC) and Hutt City Council (HCC) on expanding their outdoor smokefree policies. Both councils have run workshops with interested parties as part of their consultation process. At these workshops RPH recommended:

o WCC expand their policy to include parks, civic areas, bus shelters, outdoor dining areas, outdoor bar areas and also explore the feasibility of a tobacco retailer license scheme. o HCC expand their policy to include sports fields, skate parks, events, bus shelters, civic areas outdoor dining areas, outdoor bar areas and also explore the feasibility of a tobacco retailer license scheme.

On 13 April, WCC expanded their policy to include Waitangi Park, Botanical Gardens, bus stops, civic square, no smoking within 10 metre entrance ways of council buildings (recreation centres, libraries, civic buildings), explore a bylaw for making it illegal to drop cigarette butts and explore options for smokefree dining areas.

HCC will be discussing their policy on 2 May; the Hutt Valley CEO is presenting to this meeting.

7. Public Health Clinical Network

The Public Health Clinical Network (PHCN) is a national group comprising all 12 of the Public Health Units (PHUs) in New Zealand represented by the service manager and the Clinical Head of Department/Clinical Director from each unit.

In November 2014, the PHCN established a working group to focus on the role of PHUs in the prevention of Long Term Conditions LTCs. The group has one representative from each of the four regional DHB regions and the Ministry.

Throughout 2015, the working group reviewed relevant evidence and conducted surveys and interviews with all of the PHUs across New Zealand to determine what was currently being done by PHUs in prevention of LTCs and how the working group could best support their work.

Feedback indicated that there was a need for greater guidance and support, leadership, consistency, sharing of resources, and to build stronger strategic relationships across the health sector. The PHCN has agreed with the working group’s view that a strategic framework is the first step that will encourage a consistent and collaborative approach to the prevention of LTCs by PHUs, whilst at the same time leaving scope for local and regional variation. The Strategic Framework will make the role of PHUs in prevention of LTCs clear. It will also indicate how prevention of LTCs can be integrated across the health and wider social sectors.

This work relates closely to the recently released New Zealand Health Strategy. In the Strategy, Theme 2: Closer to Home, Action 8, seeks to increase prevention, early intervention, rehabilitation and wellbeing for Long Term Conditions by addressing common risk factors across the lifecourse. The PHCN Working Group’s work will begin to address this Action.

Wairarapa, Hutt Valley and Capital & Coast District Health Board

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PUBLIC 8. Refugee Update

In February the Wellington region received an intake of 85 quota refugees via the Mangere Resettlement Centre to be resettled in the Hutt Valley, Wellington and Porirua regions. RPH presented to the Red Cross orientation programme for this first quota intake. The presentation included immunisation, orientation to the NZ health care system, smoking cessation and eating a balanced diet. Orientation feedback to RPH from Red Cross was positive.

The larger than usual intake of 21 refugee families resettled across the Wellington sub-region is currently being visited by the Public Health Nurse transition team; visiting will continue to the end of April.

Intake 2 (April 2016) has been confirmed as 60 quota refugees resettling in the Wellington sub-region. This intake is 35 per cent larger than the usual 45 quota refugees per intake. The refugees are Vietnamese, Syrian, Columbian and Afgani. Five have been settled in the Hutt Valley, fourteen in the central wellington area and the rest in Porirua.

9. Housing Initiatives

Housing Activity over the year to end of March has included joining with partners Sustainability Trust and Tu Kotahi Asthma Trust in promoting the housing programme and securing material for housing interventions. We are working with the 3D Health Pathways (http://3d.healthpathways.org.nz/) to develop a stand-alone healthy housing pathway.

Referral activity for the period 1 July 2015 to 31 March 2016 has been:

Indicator Well Homes HAAS TOTAL Eligible referrals received 164 110 274 Non-eligible referrals received 158 158 Visits / Assessments completed 116 90 206 Visits / Assessments outstanding 48 11 59 Opt out 37 9 46 Decline 31 n/a 31

10. Immunisation

The Boostrix (Year 7) and Gardasil (Year 8 girls HPV) immunisations are on track across the sub-region although we are concerned about a negative letter regarding HPV that went to schools from an anti- immunisation group. The Ministry has released a counter letter but a drop in consents across the country has been recorded. When parents have concerns regarding the HPV vaccine the support they receive from primary care around vaccine safety facilitates increasing the number of girls receiving vaccination via the school based programme. This is more efficient than having to refer them to the GP for vaccination at the end of the school year.

11. Increased Importance of Mosquito Surveillance at International Ports

New Zealand does not currently have disease carrying (exotic) mosquitoes capable of transmitting Zika, Dengue, Chikungunya and other diseases. With the increasing prevalence of these disease in the Pacific and further afield RPH’s surveillance and response programme for exotic mosquitos is even more important. The highest risk areas for mosquito introductions are the airport, Centreport and facilities where containers of overseas goods (used cars, tyres, fruit, furniture) arrive in New Zealand. RPH works closely with Ministry for Primary Industry biosecurity officers and has a comprehensive programme of mosquito traps, surveillance for mosquito breeding sites at the airport, Centreport and adjacent areas.

Wairarapa, Hutt Valley and Capital & Coast District Health Board

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PUBLIC High risk areas are visited weekly over summer and fortnightly in winter. RPH receives between one to four call outs for possible mosquitoes per year. There has not been an exotic disease carrying mosquito identified in the Wellington region for over 10 years. We are currently reviewing all of our procedures for this important piece of work, to ensure our responses are efficient and highly effective to manage potential public health risk from the introduction of exotic mosquitoes.

12. Central North Island Drinking Water Assessment Unit (CNIDWAU)

The 3rd February 2016 was the first anniversary of the new look CNIDWAU put in place by Public Health Service Managers of Toi Te Ora, Taranaki, Hauora Tairawhiti, Hawkes Bay, MidCentral and Regional Public Health (covering the geographic districts of 10 DHBs). The Unit has evolved over the past 12 months to become an inclusive and supportive inspection body, with all members adding to quality objectives and focus. The Public Health work to ensure safe drinking water for our communities requires the structure of a Drinking Water Assessment Unit for service delivery and to meet accreditation standards for delivery of this work.

13. New Zealand Health Strategy

The Refreshed New Zealand Health Strategy has the goal that all New Zealanders Live Well, Stay Well and Get Well through individuals maintaining their health, health literacy and preventing illness. The focus is on people and the system understanding people’s needs. The Strategy encompasses the ‘what, how and why’ for the health system: what to do (services); how to do it (e.g. e-technology); and why it is done (the expected outcomes). The five Strategic Themes are: People Powered; Closer to Home; Value and High Performance; One Team; and Smart System. The Roadmap identifies 27 Action Areas and about 94 sub-activities.

RPH can address the population health actions either directly or with others through all five of the themes, but mainly in Theme 2: Closer to Home and specifically in Action Areas 8 & 9.

Theme 2: Closer to Home This theme is where public health, personal health services, other social services and the broader community and business environment intersect. The aim is to get the balance of services for long term conditions (LTCs) moved towards service users, using an investment approach for at risk and priority populations. Action Areas 8 and 9 in this theme mainly cover the work of the RPH preventive health group.

Action 8: Increase prevention, early intervention, rehabilitation and wellbeing for Long Term Conditions by addressing common risk behaviours and intervening across the lifecourse. This Action Area includes: an outcomes framework for LTCs; reoriented planning guidelines; strengthened collaboration; spread of best practice; focus work on specific populations; and implement and monitor a package of initiatives to prevent and manage childhood obesity.

Action 9: Collaboration across government agencies – social investment approach. This Action Area includes: promoting healthy nutrition and physical activity for pregnant women and children; addressing healthy housing (crowding, infectious diseases, infant mortality, stress) and expanding healthy housing programmes; collaboration between early childhood education and health (attendance and unmet health needs); government work to improve outcomes for 0 – 5 year old children at risk.

RPH also has a part to play in some of the Actions in the other four Themes and will explore how it continues to contribute and expand its role in these areas.

14. Public Health Post – April 2016 Edition (attached)

This is a quarterly publication from RPH designed principally for Primary Care. This edition includes articles on the recent Hepatitis A outbreak (linked to frozen berries), three months of notifiable diseases (sub regionally) and algal blooms in recreational water.

Wairarapa, Hutt Valley and Capital & Coast District Health Board

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PUBLIC

SUMMARY OF RPH SUBMISSIONS – OCTOBER 2015 TO DATE

Agency Topic When RPH Emphasis Upper Hutt City Council Upper Hutt Urban Growth Strategy Review 16-Oct-15 RPH supported the development of an Urban Growth Strategy for Upper Hutt and wants to work with Council to make the common goal of working with communities where they live, work and play to improve and protect their quality of life achievable. RPH wants to support Council with opportunities that make the best use of urban environments through the Urban Growth Strategy. Ministry of Health Draft Pharmacy Action Plan 2015-2020 23-Nov-15 Reviewed Draft Action Plan and provided comment on the vision, five focus areas (Population and Personal Health, Pharmacist Clinical Services, Acute Demand Management, Dispensing and Supply Services, and prescribing pharmacists), and the four enablers. Compass Health 2015-2020 Draft Population Health Strategy 23-Dec-15 Provided comment on the draft strategy, including recommendations and suggestions. RPH looks forward to working with Compass and supporting the implementation of the strategy and the need for more community action. Ministry of Education Education Act Update 14-Dec-15 RPH reviewed the Act Update Public Discussion Document and provided comment on the basis that health and wellbeing is vital for student education success. This included the inclusion of some overarching themes in the updated Act, taking a cross- sectorial approach and aligning goals and priorities to be child-centric, especially for the most vulnerable. RPH also made some recommendations on the four topics of focus outlined in the review. Hutt Valley DHB Proposal to establish Clinical Council for 15-Jan-16 RPH recommended a population health perspective HVDHB was used to develop a framework for the Clinical Councils operations, including use of evidence based recommendations and building evaluation into recommended actions. Supported the inclusion of a

Wairarapa, Hutt Valley and Capital & Coast District Health Board

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PUBLIC clinician with population health expertise and made recommendations that would strengthen the draft terms of reference. Social Services Select Residential Tenancies Amendment Bill 27-Jan-16 Letter of Support for Auckland Regional Public Health Committee Service submission. Ministry of Health Maternal and Child Health Promotion 22-Jan-16 Reviewed the consultation document; agreed there is Service Review Consultation Document opportunity to increase health promotion to maternal child and health service and support future service provision being included in recently developed Tier 2 Health Promotion Service Specifications. Recommended that immunisation rates be included as indicator for ‘Children are in good health’ and agreed a determinant approach would be a positive move. We were supportive of the principles outlined in the document. Finance and Expenditure Budget Policy Statement 2016 29-Jan-16 Recommended the Committee should consider Select Committee increasing tax levels on all tobacco products by 20% per annum from 2017-2021; increase customs duties by 20% per annum on imported tobacco and eliminate all duty free allowance on tobacco products. Ministry of Business, Residential Tenancies Amendment Bill 11-Feb-16 Reviewed proposed amendment bill: supported NZ Fire Innovation and Employment Service recommendation for placement of smoke detectors, and that all rental housing meet the 2008 insulation standard. Ministry of Health Reducing Harm Caused by Commercial 12-Feb-16 RPH supported the stated policy objective and Sunbeds assessment criteria, and supported increased controls to reduce the public’s exposure to sunbed services. Supported licensing businesses that hire out sunbeds which would allow this industry to be monitored and set a standard for information to be provided to clients. RPH saw training programmes for operators, developed at a national level for consistency, as essential to a successful licensing regime. Greater Wellington Regional Taylor Preston Air Discharge Resource 26-Feb-16 Reviewed – Need to ensure public health risks Council Consent associated with proposed activity is considered and odour considered a key issue. Recommended

Wairarapa, Hutt Valley and Capital & Coast District Health Board

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PUBLIC imposition of adequate conditions to protect the health of people and community. New Zealand Productivity Better Urban Planning 9-Mar-16 Joint submission with the NZ Centre for Sustainable Commission Cities presenting theoretical and evidence based analysis on what urban planning systems may look like in New Zealand. Sought to elicit perspectives and approaches that the Commission would find useful in the process of developing its report to the government. Foreign Affairs, Defence and International Treaty Examination of the 11-Mar-16 RPH expressed its concern around the implications of Trade Select Committee Trans-Pacific Partnership Agreement (TPPA) the TPPA on public health; in particular the ability to introduce health measures that address known risk factors including tobacco use, alcohol abuse and poor nutrition. Local Government and Resource Legislation Amendment Bill 2015 14-Mar-16 Reviewed Amendment Bill and supported the intent of Environment Select the amendments to the Act and the main objectives; Committee the optimisation of tools and commend action of improving consistency in the process. Provided comments on particular clauses and sections of the Act that specifically relate to public health protection. Greater Wellington Regional Further feedback on Proposed Natural 3-Apr-16 Provided comment on other organisation’s submission Council Resources Plan points with a focus on the need to protect drinking and recreational water quality. Advertising Standards Review of the code for advertising to 13-Apr-16 Reviewed the code and provided recommendations Authority children and the children’s code for including enhanced collaboration between industry and advertising food the health sector, a gradual phase-out of harmful advertisements to children, refer the review panel to the WHO document “A framework for implementing the set of recommendations on the marketing of foods and non-alcoholic beverages to children”. Recommended implementing an independent monitoring and evaluation group with representatives from health and industry, the complaints based process is streamlined and advertised widely, implementing increased sanctions on advertisers, expanding the definition of children to include any person up to age of 18, specific guidelines on sponsorship, adoption of a

Wairarapa, Hutt Valley and Capital & Coast District Health Board

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PUBLIC nutrient profiling system and specifically addressing the use of electronic and social media in the codes. Ministry for the Environment Consultation Document: Next Steps for 21-Apr-16 RPH supported the intent to clarify aspects of the Fresh Water management of freshwater quality particularly in regards to the concept of overall water quality and freshwater management units. Also supported the concept of freshwater objectives linked to specified parameters (values with agreed acceptable limits) and the requirement to maintain and improve freshwater quality over time.

Copies of all our submissions are available on our website - www.rph.org.nz/resources/submissions

Wairarapa, Hutt Valley and Capital & Coast District Health Board

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PUBLIC

DECISION PAPER

Date: 20 May 2016

Author Sandra Williams - Acting Director of Service Integration & Development Unit

Subject Resolution to Exclude the Public

1 RECOMMENDATION 1.1 It is recommended that the Community & Public Health and Disability Advisory Services Committees: (a) Agree that as provided by Clause 32(a), of Schedule 3 of the New Zealand Public Health and Disability Act 2000, the public are excluded from the meeting for the following reasons:

Subject Reason Reference* PHO PERFORMANCE REPORTING Enable a Minister of the Crown or any department or organisation holding the information to carry out, without Section 9(2)(I); prejudice or disadvantage, commercial activities Enable a Minister …, negotiations (including commercial and Section 9(2)(j) industrial negotiations)

OVERVIEW OF MAORI HEALTH Enable a Minister of the Crown or any department or OUTCOMES, SERVICE ACCESS AND organisation holding the information to carry out, without Section 9(2)(I); SERVICE FUNDING prejudice or disadvantage, commercial activities Enable a Minister …, negotiations (including commercial and Section 9(2)(j) industrial negotiations)

* Official Information Act 1982.

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Privacy Impact Assessment

Compass Health – Patient Portal

5 November 2015

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Table of contents

Chapter Topic Page

Executive Summary 3

A. Introduction and overview 4  Introduction to Patient Portals  Introduction to Privacy Impact Assessment

B. Description of the project and information flows 8  Patient Portal  Data  Agencies involved in Patient Portal

C. The Privacy Analysis 13  Introduction  Collecting or Obtaining Information  Security  Access and Correction  Accuracy  Use and disclosure of information  Use of unique identifiers

D. Privacy risk assessment and Privacy enhancing responses 18

E. Conclusions 20

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Executive Summary

1. This privacy impact assessment involves a review of the planned implementation of the ManageMyHealth™ patient portal to general practices across the Primary Health Organisations in the Central Region. It provides an introduction and overview of the proposal and then considers the relevant privacy principles in the collection, storage, use and disclosure of personal information that arises from the proposal in order to make some key recommendations. 2. The key recommendations are: a. To ensure that there is clear governance with proper management flowing from that governance. b. The agencies involved in the implementation of the portal must ensure clear agreements are in place between them as to their individual obligations/responsibilities to ensure privacy and confidentiality of the health data. c. The participating general practices and Medtech need ongoing vigilance against operational security risks, including ongoing staff training, system monitoring and auditing of access and use of the portal. d. Enrolment for access to the portal will show patient consent and understanding of the risks of providing access to the portal to third parties. e. Applications for registration of patients under 16 years of age should be reviewed on a case by case basis and a tiered approach to parent/guardian access should be adopted. f. Privacy officers in participating general practices to be ready for correction requests. g. Further privacy impact assessment to be obtained if it is proposed the information is to be used for another purpose.

Dated at Christchurch this 5th day of November 2015

G F Abdinor

Taylor Shaw

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A. Introduction and Overview Introduction and Overview 1. This Privacy Impact Assessment (PIA) has been commissioned by Compass Health. 2. Compass Health is a Primary Health Organisation (PHO) that provides a wide range of primary care services through 60 general practice teams and a number of other health care providers throughout the Wellington, Porirua, Kapiti and Wairarapa regions. 3. Compass Health Wellington Trust (previously named the Greater Wellington Health Trust) was formed in 1997 to contract with District Health Boards and other funders to provide health services, and was managed by the Wellington Independent Practitioner's Association (WIPA, formed in 1995). Compass Health in its present state was formed in July 2010 by the merger of three existing PHOs: Capital PHO, Tumai Mo Te Iwi, and Kapiti PHO. Wairarapa PHO was then merged into Compass Health in 2012. 4. Compass Health is the licence holder of the ManageMyHealth™ software on behalf of other Primary Health Organisations (PHO) in the Central Region including; Central PHO, Well Health Trust, Ora Toa Health Services, Cosine, Te Awakairangi, Whanganui Regional Health Network and Health Hawke’s Bay. 5. Compass Health has contracts with health professionals and organisations in the community such as General Practitioners and the wider general practice teams, to help deliver quality health services to their patients. 6. This Privacy Impact Assessment (PIA) will outline a recommended implementation approach which will be adopted by Compass Health and could be adopted across the other Central Region PHO Networks. 7. The introduction of patient portals contributes to Compass Health’s long term goals of ‘improving the patient experience of care’ and ‘strengthening general practice capability’. Through enabling practices to implement the portal, primary healthcare delivery will be enhanced, changing the way care is delivered and enabling patients to take more control of their own care. 8. The ManageMyHealth™ patient portal has already been implemented in several areas and is now at the stage of implementing a wider rollout of the patient portal across the Central Region. Introduction to Patient Portals 9. A patient portal is a website that gives patients online access to their own personal health information / patient health record to enable the patient to manage aspects of their own healthcare. 10. A patient portal potentially allows patients to access: a. Notes from a health care consultation; b. Diagnosis; c. Medical conditions; d. Discharge summaries; e. Medications; f. Immunisations and vaccinations; g. Screening information; h. Laboratory / Medical imaging results, including annotations (if any).

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11. Patient portals also generally include the ability to request repeat prescriptions, book appointments, send and receive secure messages, set reminders and recalls and manage health goals. 12. Definitions of patient portals invariably include the word "secure" as security of the information is an essential aspect of a patient portal. The security of the patient portal cannot however be assumed for the purpose of a Privacy Impact Assessment and the security must therefore be evident. 13. The New Zealand National Health IT Board supports the implementation of patient portals by general practices.1 Implementation is also supported internationally as many health service providers, including publically funded providers, recognise the benefit of patients actively engaging in their health and welfare through access to their health information.2 14. Identifiable benefits of a patient portal include: a. Visibility of health care services for patients; b. Better opportunity for patients to understand their health/well-being and to engage in treatment and care; c. Improved safety as patients can refer to the record in engaging with other health care providers such as an emergency department; d. Patient can raise issues with healthcare providers such as delays in test results or referrals e. Better management of on-going conditions; f. More efficient use of time in treatment and care: for example less need for explanations and review, ‘telephone tag’ for appointments; managing repeat prescriptions and recalls; and g. Reduction in paperwork. 15. However, there are privacy concerns and issues to be addressed. As noted above, security is critical to a patient portal. If the agency implementing the portal is not able to provide the technical security necessary, either through ability or resource, then there is a risk to privacy as well as the relationship of trust and confidence between the healthcare provider and the patient. 16. The risk is real. On 4 February 2015, Anthem, a large private health insurer in the United States, announced it had been the subject of a sophisticated cyber-attack which left 80 million health records exposed.3 Combining health records in one location creates a target for these sorts of attacks. 17. There are other privacy issues: a. Governance: ensuring the patient portal has the right governance structure in place to ensure proper delivery of the patient portal including functionality, ongoing quality improvement and education, auditing, legal compliance and privacy enhancing processes. b. Source of data: has the patient authorised collection from all sources of data?

1 http://ithealthboard.health.nz/patient-portals 2 http://www.england.nhs.uk/ourwork/pe/patient-online/; http://www.healthit.gov/providers- professionals/faqs/what-patient-portal http://www.ehealth.gov.au/internet/ehealth/publishing.nsf/content/home; http://mypatientaccess.ca/ 3 http://www.forbes.com/sites/danmunro/2015/02/05/health-data-breach-at-anthem-is-a-blockbuster- could-affect-80-million/

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The patient does not have to authorise collection of personal information from all sources under the Health Information Privacy Code. When authorisation is not required the reason why should be recorded on the patient’s file to refer to in the case of a complaint. c. Patient login protocols/authentication: ensuring the patient is the person accessing their own health information through clear identification and secure passwords. d. Abuse: the risk that patients are forced to give access to their health information to other people such as employers or family members under duress. While arguably this is the patient’s responsibility to ensure they do not give access, either through logging on themselves and leaving the open portal to another party to view or revealing their log-on password, it is known to the health industry that there are oppressive relationships where vulnerable patients may feel obliged to provide access. This can include children and elderly. e. Identity theft: through cyber breach of security or inadvertent disclosure of access. f. Correction requests: agencies need to be prepared to deal with correction of health information and challenges to accuracy as a result of increased patient access. There are strict time limits that must be complied with and resources need to be allocated to deal with such requests. g. Confidential information: agencies need to be ready to deal with information they can legitimately withhold from patients, such as information which will involve the unwarranted disclosure of a third party’s affairs or information which could lead to serious harm to the individual or to others. h. Functional creep: the patient portal will contain the health records of numerous patients creating an information hub which will be of commercial interest to some agencies and of legal interest to other agencies such as the police, immigration and the courts. While the information requests from such agencies may be for good reasons, the existence of the database and the ease of access by portal providers may impact on patient’s desire to provide full information for their treatment and care in the fear of risk of disclosure. i. Unauthorised staff access to health records: this is an issue for healthcare providers generally in the use of electronic records but also an issue for the IT agency providing the portal. Access levels for these ‘privileged users’ need to be identified, as well as appropriate authorisation and controls. 18. Without minimising the benefits of patient portals, the privacy risks, especially in security, are real and significant. It is important that any patient portal operates in a highly secure environment with privacy enhancing responses built into the system. 19. Compass Health has used the label ‘Health Care Online’ for the purpose of familiarising the concept of a patient portal to General Practices and patients. Introduction to Privacy Impact Assessments 20. A PIA4 is a systematic process for evaluating a proposal in terms of its impact upon privacy. It is designed to identify the potential effects that a proposal may have on an individual’s privacy, examine how any detrimental effects upon privacy might be

4 Privacy Impact Assessment Handbook, Office of the Privacy Commissioner 2007: https://www.privacy.org.nz/news-and-publications/guidance-resources/privacy-impact-assessment- handbook/

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overcome and ensure compliance with the health information privacy rules set out in the Health Information Privacy Code 1994.5 21. Elements of a PIA include an introduction and overview, description of the project and information flows, the privacy analysis, privacy risk assessment, privacy enhancing responses, compliance mechanisms and conclusions. This assessment is prepared with reference to the guidelines issued by Office of the Privacy Commissioner. 22. There are obvious privacy issues which arise from any patient portal as identified above. There are also general privacy and confidentiality issues which immediately arise from any proposal which involves a health information record as: a. health information is sensitive and must be protected; b. health information is collected in a professional relationship of confidence and trust and there must be no risk to that relationship; c. health records must be accurate; and d. it is important to comply with obligations under the Health Information Privacy Code 1994, the Public Records Act 2005, and the Code of Health and Disability Services Consumers' Rights together with relevant standards such as the Health and Disability Services Standards (NZS 8134: 2008), the Health Records Standards (NZS 8153: 2002) and the Referrals, Status and Discharges (RSD) Standards: Business Process (HISO 10011.1), Messaging Standard (HISO 10011.2) and Implementation Guide (HISO 10011.3). There are Codes of Practice and Protocols such as the Health Network Code of Practice (SNZ HB 8169:2002) and the Ethnicity Data Protocols for the Health & Disability Sector 2004.6 23. Patients and health service providers need to have trust and confidence that the system is legally compliant, meets professional obligations of confidentiality and privacy and does not provide unnecessary and unauthorised access to patient health information. 24. This PIA has involved reference to the specifications for the system and has been prepared in consultation with representatives of Medtech Global Limited and Compass Health. 25. A draft of this assessment report has been circulated to the Office of the Privacy Commissioner for feedback. That feedback has been incorporated into this Assessment.

5 The Health Information privacy Code 1994 is a code of practice issued by the Privacy Commissioner under the Privacy Act 1993. See: https://www.privacy.org.nz/the-privacy-act-and- codes/codes-of-practice/health-information-privacy-code/ 6 The National Health IT Board has helpfully identified, approved and endorsed relevant standards which can be viewed through its website: http://ithealthboard.health.nz/standards.

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B. Description of the project and information flows

Patient Portal 26. Compass Health and the other Central Region PHOs are looking to support general practices to implement a patient portal into general practices across the Central Region. 27. There are multiple patient portal products on the market; however this Privacy Impact Assessment will discuss the implementation of the Medtech Limited (“Medtech”) ManageMyHealth™ platform. Medtech Limited is independently accredited for ISO 9001 Quality Management Systems and also independently certified for Information Security Management System (ISMS: ISO 27001) 28. The ManageMyHealth™ website (http://managemyhealth.co.nz/) includes a comprehensive privacy statement which is annexed to this document as Schedule 1. 29. Compass Health has also created a comprehensive setup guide for general practices. This guide is called Health Care Online: Start-up Guide for General Practice (“the start-up guide”). The start-up guide contains example resources including a patient brochure, template consent form, example terms and conditions and a guide for reception use. 30. Implementation of a patient portal by general practices is on an opt-in basis and each participating general practice will be responsible for selecting which of their patients are provided access to the portal and various key clinical and business decisions relating to the information available to each patient via the portal and the services offered via the patient portal to their patients. 31. These key decisions include but are not limited to: a. Which patients will be provided access to the portal (will access be provided to selected patients or universally across the practice); b. The fees (if any) that will be charged for certain services provided through the patient portal; c. Which providers within a practice will receive secure messages from the patients; d. How quickly these messages will be responded to; e. What optional health information will be made available to the patients through the patient portal; and f. How laboratory results will be dealt with in the patient portal. 32. There will be two types of information accessible in the patient portal: a. Information sourced from the patient's general practice; and b. Information uploaded to the portal by the patient or third parties authorised by the patient.

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33. The diagram below illustrates the information flows:

ManageMyHealth™ ManageMyHealth™ Patient Portal Server (Patient Access)

Secure Internet Connection

General Practice Authorised Third Party

Data

34. The health information that could potentially be made available through the portal is significant and includes: a. Basic patient details such as full name, gender, address, date of birth, national health index number (NHI), phone number, cell phone number, email address, emergency contact person and any additional demographics (eg ethnicity); b. Prescriptions; c. Allergies; d. Immunisations; e. Diagnoses; f. Laboratory results; g. Consultation notes; h. Recalls i. Measurements; and j. Names of relevant health care providers associated to each health record item. 35. The information can be characterised at the general practice as sensitive and highly confidential. 36. As noted above, each general practice is able to determine the types of information available via the patient portal. 37. It is possible to withhold certain items from the patient record so that the items are not available via the portal. Items that can be withheld from the portal include but are not restricted to diagnosis, medications and inbox items.

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Who will be able to access information via the patient portal? 38. Each participating general practice will determine which staff members and patients will have access to the patient portal. Each staff member and patient offered access to the patient portal will need to register. Registrations will be linked to the individual’s unique email address. 39. Each patient will be required to provide a unique email address as part of the registration process. This should be a personal email address which is not shared with another person. This address also should not be used for any other person to register to the Patient Portal. 40. Each patient will be identified by the general practice by: a. enrolment process to the practice or b. photo identification or c. clinician endorsement 41. Each patient will also be required to complete a patient consent form as part of the registration process. 42. The ManageMyHealth™ website provides that parents can register their children as users of the patient portal, so that the parents can access their child’s medical records. Compass Health has recommended that registration applications for patients under the age of 18 years of age should be reviewed on a case by case basis. Each participating general practice should consider their own restrictions in regards to patients younger than 18 years of age and should consider a process which reviews access at different ages. The privacy implications of this will be discussed in more detail in the next section of this assessment. 43. Compass Health recommends the following access parameters are implemented for patients under 18: a. Patients under the age of 10 years can register to use the portal and the primary parent/guardian of the child should be responsible for maintaining control of their account. b. Patients between 10 years and 15 years old can register to use the portal and their accounts should be flagged to providers so that they’re aware that the parent/guardian may have access to the child’s portal and should treat information sensitively as appropriate. c. Patients 16 years old and older can register for their own accounts with no parental access provided. d. Where patients under the age of 16 are registering to use the portal, the patient’s parents/guardians should complete a separate registration form which outlines the special access provisions for these patients – namely that parent/guardian access to the portal may be removed at the request of the child, if conflict between parents/guardians arises and/or when the child turns 16. 44. There is potential for patients to provide access to their records in the portal to trusted third parties (for example, family members) in the future. 45. The level of access for staff members will be at one of three levels: administration (“Admin”), Reception or Clinical. The Admin permission level allows the staff member to alter administrative configuration and is recommended for the practice manager. The Reception permission level allows the staff member to view basic demographic information about the patient and allows them to register a patient for the portal. The Clinical permission level allows the staff member to view the clinical detail within the

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system and it is recommended that this access level is only provided to doctors and registered nurses in the practice. 46. When a staff member or patient leaves the practice, it is recommended in the start-up guide that their access to the portal should be removed by the practice. 47. Usage reports and statistics are available through the portal and can be used by the general practice to audit access and usage of the portal. Likewise, the comprehensive access log or history can be used by the patient to audit access to their information. How is access provided? 48. Access is provided to both patients and providers via a secure website protected by firewall and accessed using an encrypted password. 49. Access is also available via iOS App from the App Store and Android App from Google Play. Both Apps access the secure website protected by firewall require the use of the same encrypted password used for the secure website. No data is stored on the mobile devices The Agencies involved in Patient Portal 50. As identified above, key agencies are Compass Health, the other Central Region PHOs, Medtech and the individual general practices. 51. Compass Health’s Patient Portal Operational Team will be the operational resource that is used on a daily basis to support the participating general practices to implement the Patient Portal. 52. This team will be overseen by the Information Management Service Level Alliance (IMSLA) Governance Group, which governs a range of ICT initiatives, including the Shared Care Record project and patient portals, for the Capital and Coast, Hutt Valley and Wairarapa District Health Board regions. The IMSLA will: a. provide project data governance; b. policy and procedure oversight; c. appointment of clinical auditors where necessary; d. review privacy audits and outcomes; and e. be responsible for approval and control of any significant changes or expansions to inter-organisational information sharing projects. 53. The IMSLA governance group reports to the alliance leadership teams of the Capital and Coast, Hutt Valley and Wairarapa District Health Boards and it will continue to monitor the patient portal project as required during and post implementation.

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54. The diagram below illustrates the governance structure for the project:

CCDHB Alliance Team HVDHB Alliance Team WDHB Alliance Team

Information Management Service Level Alliance

Compass Health Patient Participating General Portal Operational Team Practice

Medtech Limited

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C. The Privacy Analysis

Introduction 55. The Health Information Privacy Code 1994 provides guidelines on the collection of health information (rules 1-4). Health information should only be collected for the necessary and lawful purposes of the agency, health information should be collected from the patient concerned unless an exception applies, health agencies should be transparent about collection of health information, how it is to be used and by whom, and collection should be lawful and fair. 56. Guidelines on security (rule 5), access and correction (rules 6 & 7), accuracy (rule 8), retention (rule 9), use and disclosure (rules 10 and 11) and unique identifiers (rule 12) are also provided. Collecting or Obtaining Information 57. Health Information must be collected for the necessary and lawful purposes of the agency (Rule 1). In this case, some of the health information has already been collected from the patient by the general practice for the provision of health care services. All that is proposed is that the patient be able to view some of that data. 58. Other health information will be uploaded to the patient portal by the individual (or potentially in the future by third parties authorised by that individual) for the purpose of documenting health goals and recording progress in achieving them. 59. The purposes are lawful and necessary. As healthcare moves into more active participation from patients, patients need access to their data. Having said that, participation is not compulsory – patients are not required to agree to use of a patient portal as part of the provision of health services. 60. As with any collection of health information, under rule 3 there must be transparency. Patients need to know the purposes of collection and, importantly who may see it. Patients will need to know about the relevant agencies, including Medtech, who as a platform provider will have access to data. 61. Rule 4 says information should not be collected by unfair means. In this case, as participation in the patient portal is voluntary, there is no issue with rule 4. Security 62. Security must be addressed in order to comply with Rule 5 of the Health Information Privacy Code 1994, the Health Network Code of Practice and the RSD Standards. 63. Rule 5 requires a health agency which holds health information to ensure that the information is protected by such security safeguards as is reasonable in the circumstances to take against: a. loss; b. access, use, modification or disclosure without authority; and c. other misuse. 64. While agencies are only required to take reasonable security measures, the high level of confidentiality and sensitivity of the information requires on-going vigilance due to the risk of new and sophisticated cyber attacks. Staff need to be continually training and familiarising themselves with the risk and implementing appropriate protections as well as monitoring the system. The recent cyber attack on Anthem, as described above, was not discovered for a two week period. 65. Rule 5 also requires a health agency to dispose of documents in a matter which preserves privacy and to ensure that if information is given to a third party that

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anything reasonably within its power is done to prevent the unauthorised use of disclosure of that information. 66. In terms of security, key issues arising from the patient portal are: a. Authentication; b. Transmission; c. Firewall security and cyber attacks; d. Backups; and e. Access to the data. 67. The first 4 issues of these relate to the security of the technology used in the system and the last issue primarily relates to the users of the system. Operational Security (Technology) Authentication 68. Given the sensitivity of health information, it is critical that users accessing the patient portal are properly authenticated – that is, they are who they say they are. 69. Patients are required to be identified by the general practice and provide a unique e- mail address when registering for the patient portal, and to set up a password to be used to authenticate their identity when accessing the portal. The password requirements include a minimum of 6 characters and a mix of alpha numeric characters. 70. The use of passwords for authentication, especially for sensitive information like health information, has increasingly become the subject of criticism, especially given the password conundrum – short and simple passwords are easy to remember, but they are also easy to guess or hack. Long and complex passwords are more difficult to guess or hack but difficult to remember, often resulting in password re-use, which increases vulnerability if the password is compromised.7 71. Responses to this challenge include the use of two factor or two channel authentication. An example of two factor authentication is where a password is used in conjunction with a unique code sent to the user’s cell-phone or in conjunction with a fingerprint or retinal scan. The use of two factor or two channel authentication is however perceived as being less convenient for the user. 72. Another risk with the use of passwords for authentication is brute force attacks, which is where automated software is used to generate a large number of consecutive guesses of what the password might be. To provide protection against these types of attacks a user account is blocked after 5 failed log-on attempts. Transmission 73. Transmission of data (including for secure messaging between the patient and practice) is managed through encryption and HTTPS, which is a well-recognised secure internet protocol. Data is encrypted using 256 bit encryption where the patient uses the latest browser versions and 128 bit encryption where older browser versions are used. 74. Messages sent through the portal between the patient and the practice do not leave the ManageMyHealth system and thus remain protected by the transmission safeguards, unlike regular email messages.

7 Should the FTC Kill the Password? The Case for Better Authentication by Daniel Solove and Woodrow Hartzog, Privacy & Security Law Report, 14 PVLR 1353, 07/27/2015

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75. ManageMyHealth™ New Zealand is hosted in a secure commercial data centre in New Zealand. No data is stored by ManageMyHealth™ outside of New Zealand.” Firewall 76. ManageMyHealth makes use of an industry standard server firewall to protect against cyber attacks. Destruction 77. The health information uploaded to the portal is not deleted unless the user’s access to the portal is terminated. There will need to be direction about this in accordance with the Public Records Act 2005 (if applicable), the Health (Retention of Health Information) Regulations 1996 and rule 9 which requires health information to be held only for as long as necessary. Printing The Patient Portal does not allow for the entire health record to be printed via the ManageMyHealth™ application. This is an additional security provision to minimise the risk of health information being easily extracted from the safety of the portal environment and then used for other purposes. The ManageMyHealth™ application policy to supporting printing is to enable only ability to print in specific scenarios. (e.g. ManageMyHealth™ provides for Test results to be printed as users have requested this capability.)Operational Security (Users) 78. Systems also need to be in place to ensure that there is a proper authority matrix for access to the patient portal and its data by staff from the participating general practices. There should be appropriate consequences for staff implementing the system accessing data inappropriately. Depending on the behaviour involved, this should include an enquiry process with the ability to refer the matter to an individual’s employer or professional body (if necessary). There should also be the ability to lock out or refuse access to the system to any staff member. 79. Compass Health already has contractual arrangements in place to ensure that information available to Medtech is not to be used for any other purpose other than serving information to authorised users (providers or patients). The only exception to this is where the information is properly anonymised or de-identified so that it can be used for marketing Medtech’s product. The patients need to be educated and made aware of the risk of sharing their passwords with anyone or being pressured into providing access to their records via the portal. Patients should be made aware that they can contact the general practice if they have any concerns about being pressured to provide access to their health information. Access and correction 80. Rules 6 and 7 gives individuals the right to ask an agency if it holds health information about him or her and, in most cases, to have access to that information. That person has also the right to request correction of any of the information held about him or her. 81. The whole point of a patient portal is to provide automatic access to registered patients, so the main issue will be ensuring there is resource in place to deal with rule 7 requests in respect of correction. International experience suggests that these requests rise significantly once patients have access to their information. 82. The ManageMyHealth privacy statement does provide that Medtech will act reasonably to ensure users will have access to their information at anytime, except in certain stated circumstances which include where ManageMyHealth requires a planned outage. Compass Health should obtain further information from Medtech

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regarding these planned outages so that users can be told up front what reasonable availability to the portal will be. 83. Each participating general practice also needs to be ready to deal with information they can legitimately withhold from patients, such as information which will involve the unwarranted disclosure of a third party’s affairs or information which could lead to serious harm to the individual or to others. 84. Accordingly, each participating general practice will need to ensure its privacy officer is prepared for such requests which will likely require additional resource in support. 85. As noted above, Compass Health believes that there are medical benefits to patients under the age of 16 having access to the patient portal and recommends that a tiered approach is adopted to manage the potential privacy concerns that may arise from this access. Compass Health recommends that applications for registration for patients younger than 16 years of age be reviewed on a case by case basis by the general practice. Given that parents/guardians do not have an automatic right of access to their children’s information, this is a sensible safeguard to manage the risks inherent in providing them with ‘automatic access’ to their child’s health records via the patient portal.8 86. Additionally, Compass Health recommends a tiered approach to parent/guardian access to their child’s portal: a. where the patient is under 10 years old the primary parent/guardian is provided access to the child’s portal; b. where the patient is 10 to 15 years old the patient’s record if flagged to highlight that the parent/guardian may have access to the portal and information should be treated with appropriate sensitivity; and finally c. where the patient is 16 years old no parent/guardian access is provided.9 This tiered approach can be tailored as appropriate by the general practice. 87. Compass Health also recommends that parents/guardians being provided access to their child’s portal should be required to complete a supplementary registration form which confirms their identity, legal relationship with the patient and that access to the portal may be removed at the patient’s request, where conflict arises between parents/guardians (due to the potential disclosure of personal information about one parent to another), and/or where the patient reaches 16 years of age. This appears to be a sensible approach to managing the potential privacy risks that may arise from parent/guardian access to a child’s patient portal. Accuracy 88. Rule 8 requires a health agency to take reasonable steps to check accuracy of information before use. 89. The relevance of rule 8 is that it flows on from rule 7. If a patient identifies incorrect information and seeks to have it corrected, this can create an issue for the participating general practice if it seeks to rely on incorrect data. Correction requests are relevant to rule 8. 90. Additionally, patients are able to upload their own health information to the patient portal. 91. All health information is labelled with the source of the information.

8 Refer Rule 11 of Health Information Privacy Code and section 22F of the Health Act 1956 9 The ages in the respective tiers were chosen to align with Youth Medical Services which are available to patients from the age of 10 years. The tiers are only a guideline however and will need to be reviewed on a case by case basis.

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92. Patients are currently able to upload the following information to the patient portal and make this available to the general practice (or keep as personal record). 1. Demographic details; 2. Measurements (weight, blood pressure etc.); 3. “Journal” entries; 4. Goals and Tasks; and 5. Attachments to messages. 93. The demographic details will be sent to the practice automatically to enable the practice to confirm if it would like to update its system with the new information. 94. The practice can choose which measurements should be imported into the practice system if added by the patient. The practice then has the opportunity to review the measurement before ‘filing’ or adding to the practice system. 95. “Journal” entries, goals and tasks are promoted as ‘personal’ tools. The patient can share these entries with the General Practice however the message stays on ManageMyHealth and is not saved in or sent to the practice system. 96. With attachments to messages (similar to the usual e-mail attachment function) the message will be stored within the patient record in practice system. The practice can set terms and conditions to be accepted before sending this type of messaging. 97. Care needs to be taken to check the accuracy of any patient provided information before it is relied upon by the General Practice. Use and disclosure of information 98. Rule 10 requires a health agency to use information for the purposes for which it was collected. The health data was collected in order to provide health services to patients. It is now proposed to share that data in one system to enable patient access at a single point of contact (the patient portal). This requires consent. 99. Rule 11 states that health information should not be disclosed to third parties unless an exception applies which includes consent. The patient portal requires the general practice to share data with Medtech, as the platform provider, and that should be with patient consent. 100. ManageMyHealth’s Privacy Statement also provides that “Medtech may disclose personal information if required to do so to … protect and defend the rights or property of Medtech and our family of websites”. This use and disclosure requires consent.

Unique Identifiers 101. Rule 12 of the Health Information Privacy Code 1994 does not allow a health agency to assign a unique identifier unless it is necessary to the agency’s functions. Though health agencies are not to use unique identifiers assigned by another agency, the use of the National Health Index (NHI) number is permitted throughout the health sector. Unique identifiers should not be assigned until a person is properly authenticated. 102. In this system there are a number of unique identifiers: the NHI and authentication identifiers. It appears the use of these unique identifiers is compliant with Rule 12.

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D. Privacy risk assessment and Privacy Enhancing Responses 103. This section summarises the key points identified above and provides a list of issues and/or responses. 104. There needs to be clear governance of the patient portal with proper management flowing from that governance. 105. Governance involves ensuring there are systems in place to ensure integrity and security. In implementing the patient portal there should be clear processes for ongoing quality improvement and education, auditing, legal compliance and privacy enhancing processes. 106. The governance group should require Medtech to notify the governance group’s administrator and all ManageMyHealth™ users if any changes are made to the ManageMyHealth™ Privacy Statement. 107. In particular, Compass Health and each participating general practice needs to be careful that the single point of access and sharing of health data (creating an information hub) does not lead to functional creep and turns the database into a repository of information for commercial interests or for the police/courts. Third party access requests should be managed as they are currently with existing health records. 108. The agencies involved need to have clear agreements between them as to their individual obligations/responsibilities to ensure privacy and confidentiality is maintained in transmission of data and access. Each participating general practice and Medtech will need to ensure information transmitted from their systems is encrypted and sent safely into the patient portal. Medtech needs to ensure information received and information accessed is stored securely and transmitted securely. 109. Each participating general practice will need to consider if there is any data which needs to remain confidential and which could be legitimately withheld from patients, such as information which may involve the unwarranted disclosure of a third party’s affairs or information which could lead to serious harm to the individual or to others. 110. The participating general practices will need to consider whether they will allow patients under the age of 16 to register as users of the patient portal and whether parents will be allowed to register their children as users. Compass Health has recommended that applications for patients be reviewed on a case by case basis and where appropriate a tiered approach to parent/guardian access, based upon the age of the patient, be adopted, along with supplementary registration by the parent/guardian that is provided access to their child’s portal. This supplementary registration form should make it very clear that parent/guardian access to their child’s health information via the portal can be reviewed and potentially removed at any time and at the patient’s request, where the practitioner believes appropriate and where the patient reaches 16 years of age. This seems like a sensible way to manage the privacy risks inherent in providing ‘automatic access’ to health information to children and/or to their parents. 111. The participating general practices and Medtech need ongoing vigilance against operational security risks, including ongoing staff training, system monitoring and auditing of access and use of the portal. 112. Medtech and each participating general practice will need to ensure that they have the following in place: a. A privacy policy including clear policy guidelines on the use of the system together with training;

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b. Staff confidentiality agreements; c. Access matrix identifying roles and access restrictions; d. Authorisation controls defining which staff of which agencies may add, or correct information on records and electronic foot printing of user access; e. Process for destruction/removal of health records in compliance with the law; f. Managing and reporting of privacy breaches (Office of the Privacy Commissioner guidelines recommended);10 g. A complaints process for patients who are concerned with their health information management; and h. The role of a Privacy Officer. The privacy officer will not only need to be alert to patient requests for correction to records but also requests from other agencies such as the Police, Courts, government agencies and insurance companies. The response to these requests should be consistent with law and established policies. 113. Each participating general practice will also need to be prepared for correction requests as patients’ access the portal. 114. There needs to be good information, including a privacy statement, available by pamphlet and on a website, explaining to patients how the patient portal works, how information is gathered into a single source and from where, how the information may be used and disclosed, who has access to it and who the agencies involved are. Patients should also be told what percentage of the time the service, taking into account planned outages, will be available to them. A help desk is also recommended. 115. Patient login/authentication must be secure enough to avoid identification theft. Patients need to know about keeping their login secure and their ability to let their healthcare provider know if anyone is putting pressure on them for inappropriate access to their data. 116. Enrolment for access to a patient portal will need to show patient consent and understanding of the above matters.

10 The Office of the Privacy Commissioner has developed privacy breach guidelines which are recommended: see Key Steps for Agencies in Responding to Privacy Breaches and Privacy Breach Checklist : www.privacy.org.nz

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G. Conclusions 117. The implementation of patient portals fits well with Compass Health’s long term goals of improving the patient experience of care and strengthening general practice capability. There is the potential for portals to assist patients to engage with their own health management and to enable primary health resources to be used more efficiently and effectively. 118. Care will however need to be taken to address the potential privacy risks that arise from the use of patient portals to ensure that the relationship of trust and confidence between the patient and general practice is not put at risk.

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Schedule 1 – ManageMyHealth Privacy Statement ManageMyHealth™ Privacy Statement Last Updated on Friday, January 1, 2010 Introduction Medtech Limited is committed to protecting your privacy through its secure information technology service, ManageMyHealth™, and its strict adherence to privacy laws. Medtech Limited is also referred to as "Medtech", "we" and "us" in this statement and when referred to, such reference includes any person or organisation to which it has licensed or assigned its rights and obligations. This Privacy Statement applies to the use of the ManageMyHealth™ site at www.managemyhealth.co.nz ("ManageMyHealth™") and the data collected by Medtech through ManageMyHealth™. ManageMyHealth™ is a personal health service that lets you review, gather, edit, store, and deal with health information online. With ManageMyHealth™, you have the ability to access your own medical records if your medical practitioner makes these available through ManageMyHealth™. You can also share your health information with family, friends, and health care professionals, and have access to online health information management tools. You can choose to share specific information (or all information); with other people (such as friends and family) and with applications (such as applications that add data to your health records, provide information to your healthcare provider, or use some of your health records to provide information to you about managing your health). ManageMyHealth™ also provides information on well being generally and incorporates contributions from third parties. This Privacy Statement is in two parts, Part A deals with Privacy generally and Part B specifically addresses the Health Information Privacy Rules prescribed in the New Zealand Health Information Privacy Code 1994 (as amended) published by the New Zealand Privacy Commissioner. By using ManageMyHealth™ you agree to be bound by this Privacy Statement and the Terms of Use.

Part A – General Privacy Statement Collection of your personal information The first time you sign in to ManageMyHealth™, ManageMyHealth™ asks you to create an account. To create an account, you must provide personal information such as name, date of birth, e-mail address & physical address. We may request other optional information, but we clearly indicate that such information is optional. You can review and update your account information. You can modify, add, or delete any optional account information by signing into your ManageMyHealth™ account and editing your account profile. An account allows you to manage one or more health records, such as the ones you create for yourself and your family members. You can choose what information to put in your records. To access your medical records held by your participating Healthcare Provider an activation code must be obtained in person from the Healthcare Provider. One specific e-mail address must be provided along with a valid photo-id. You can close your account at any time by signing into your ManageMyHealth™ account and editing your account profile. We wait 90 days before permanently deleting your account information and all records.

Storage of information Any information or records you maintain with a ManageMyHealth™ account will be hosted on servers in a secure environment by a commercially reputable hosting vendor using best practice security techniques. If you choose to access your medical records held by your medical practitioner through ManageMyHealth™ you are consenting to ManageMyHealth™ storing that information on your behalf and obtaining periodic updates to the records via your Healthcare Provider.

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Security When any information is uploaded to your ManageMyHealth™ account, it sends it over the Internet using Secure Sockets Layer (SSL). This method encrypts the information to help prevent others from reading it while it's in transit from your computer to ManageMyHealth™. The health information held is encrypted within the ManageMyHealth™ database. Further information about the security measures used is contained under the heading Rule 5 – Storage and Security of Health Information in Part B of this statement. If you're using ManageMyHealth™ to upload sensitive data, you should properly secure your computer. To help do this, you can use anti-spyware and virus protection software. You can also restrict access to your computer (for example, by using a strong password for your computer login and a network firewall). Medtech has incorporated all reasonable measures to protect your information, however, we are reliant upon you to do the same. Medtech cannot be held liable in any way for events beyond our control or in any way for accidental or unauthorised access of your information. Accidental access could be obtained by leaving yourself logged on and leaving your computer unattended, ‘over-the-shoulder’ access or from unsecure print-outs of your information. Unauthorised access could involve someone who is known to you guessing your password or a stranger/hacker circumventing our security measures. Social engineering is the easiest way to achieve unauthorised access to your information. To prevent this never give your access details to anyone, this includes your password.

Sharing your personal health information A feature of ManageMyHealth™ is the ability to share your health information with people and services that can help you manage your health or meet your health-related goals. You can share information in a ManageMyHealth™ account with another person or business through ManageMyHealth™.

How we may use your personal information Medtech collects and uses your information to operate and improve and deliver ManageMyHealth™ or carry out the transactions you have requested. These uses may include providing you with more effective customer service; making ManageMyHealth™ or its services easier to use by eliminating the need for you to repeatedly enter the same information; performing research and analysis aimed at improving our products, services and technologies; and displaying content and advertising that are customised to your interests and preferences. Medtech may occasionally hire other companies to provide services on our behalf, such as web site hosting; packaging, mailing; answering customer questions about products and services; and sending information about our products, special offers, and other new services. If we provide personal information to such companies, we only provide the personal information they need to deliver ManageMyHealth™ product and services. They are required to maintain the confidentiality of the information and are prohibited from using that information for any other purpose. Medtech may disclose personal information if required to do so by law or in good faith believe that such action is necessary to: comply with the law, comply with legal proceedings served on Medtech or ManageMyHealth™; protect and defend the rights or property of Medtech and our family of web sites; or, act in urgent circumstances to protect the personal safety of users of Medtech products or members of the public.

How we use aggregate information and statistics Medtech may use aggregated information from ManageMyHealth™ to improve the quality of ManageMyHealth™ and for marketing of ManageMyHealth™. This aggregated information is not associated with any individual account. Medtech does not use your individual account and record information from ManageMyHealth™ for marketing without Medtech first asking for and receiving your opt-in consent.

Record access and controls

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When you create a record, you become the person responsible for that record. You decide what level and degree of access to grant other users of your ManageMyHealth™ records. You can view and update records you are responsible for and can examine the history of access to those records.

Sharing records with applications through ManageMyHealth™ We may provide you with information about applications that connect with ManageMyHealth™. You can view the applications and should examine their privacy statements and terms of use prior to using them or allowing them access to any of your health information. In order to access ManageMyHealth™, the application provider must commit to protecting the privacy of your health data. No application has access to your information through ManageMyHealth™ unless and until you opt in through ManageMyHealth™ to grant it access. You control what health information you allow an application to access and the length of time they can access the information.

E-mail controls To keep you informed of the latest improvements, ManageMyHealth™ will send you a newsletter. By creating an account you have given us your implied consent to send you such newsletters. If you do not want to receive the newsletter, you can unsubscribe at any time.

Use of cookies We only use temporary cookies on ManageMyHealth™ which are deleted upon you signing out. The cookies contain no personal information.

Changes to this privacy statement We may occasionally update this privacy statement. When we do, we will also revise the "last updated" date at the top of the privacy statement. We encourage you to review this privacy statement periodically to stay informed about how we are helping to protect the personal information we collect. Your continued use of ManageMyHealth™ constitutes your agreement to this privacy statement and any updates.

Enforcement of this privacy statement Medtech must comply with privacy legislation when dealing with personal information. If you would like any further information or have any queries, problems or complaints relating to our Privacy Policy or our information handling practices in general, please contact us at: Privacy Officer ManageMyHealth™ PO Box 3329, Shortland Street, Auckland 1140 or Email: [email protected]

Part B – Compliance with the Rules contained in the Health Information Privacy Code The New Zealand Health Information Privacy Code 1994 as amended modifies the privacy rules contained in the Privacy Act 1993 as they relate to health information. Each of these rules is addressed below.

Rule 1 Purpose of Collection of Health Information Information is collected and maintained for individuals for the purpose of improving or maintaining their health and well being. Use of the information for other purposes is not authorised. Express consent must be given by the individual if the information is used for any other purpose.

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Aggregated information which has identifying information removed may be used to improve the quality of the services offered on ManageMyHealth™, for marketing of ManageMyHealth™ and for general analysis or population health statistics. Medtech does not use your individual account and record information from ManageMyHealth™ for marketing without Medtech first asking for and receiving your opt-in consent. Any information submitted to ManageMyHealth™ Community Forums or Blogs becomes public information and is not covered by this privacy statement. Accordingly you should be cautious as to what personal information you supply in these areas.

Rule 2 Source of Health Information The source of the information will come directly or indirectly from you. This includes the information you authorise to be supplied by your doctor or other health professional. Medtech has no control over the content of the information which is provided to you by your Healthcare Provider or other authorised third parties.

Rule 3 Collection of Health Information from Individual Information submitted to ManageMyHealth™ for collection must be specifically authorised by the individual. Subsequent access to the information by third persons (such as health care professionals and family members) will only be accessible by those persons the individual specifically authorises to have such access.

Rule 4 Manner of Collection of Health Information The collection of information will always be undertaken in a manner that is lawful and with the specific authorisation of the individual. Information entered by an individual (or on behalf of an individual eg. minor in their care) is entirely at their discretion. If Information is provided on behalf of an individual, it is assumed the provider has the legal right to do so.

Rule 5 Storage and Security of Health Information Storage of information is hosted in a secure environment by a commercially reputable hosting vendor using best practice security techniques. The information is encrypted within the ManageMyHealth™ database. Information delivered to ManageMyHealth™ from your Healthcare Provider is encrypted during transmission. Your information provided to you via a web browser is encrypted during transmission using the highest standard available today using VeriSign Digital Certificates. This provides at least 128 bit encryption or 256 bit encryption if you are using the latest version of the web browser. ManageMyHealth™ is protected by a reputable network Firewall. Daily Backups are performed to allow system restores to be performed in a disaster recovery situation. Access to your account will be blocked following 5 failed attempts to logon. Your account is unblocked by using the forgotten password function on the website. Information provided to you from your Healthcare Provider cannot be modified within the system. Medtech follows strict internal procedures in collecting, storing and disclosing information about you.

Rule 6 Access to Personal Health Information We will act reasonably to ensure you will have access to your information at anytime. The exceptions to this include: •You have been denied access to ManageMyHealth™;

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•ManageMyHealth™ requires a planned outage; •ManageMyHealth™ experiences an unplanned outage. Such events are considered beyond our control but all reasonable efforts will be used to re-establish the service as soon as possible. We offer no guarantees that access to your information is available at all times. Initially access to your information will be limited to you and the registering Healthcare Provider eg. your doctor, including other clinicians within your Healthcare Provider Practice. This will be expanded in later versions to allow other healthcare professionals you authorise and an optional "trust list" functionality which will allow you to grant access to other individuals involved with your care, such as your family members.

Rule 7 Correction of Health Information Information entered by you can be modified at anytime. If you do modify your information you must consider what impact that may have on a person authorised by you who may have previously read the information and potentially acted on it. If this impact is significant you should inform the individual of the change. All other information about you provided by authorised third parties cannot be modified by ManageMyHealth™. If you feel information requires correction you must contact the information source and request a correction. ManageMyHealth™ has no control of or responsibility for this process or the outcome.

Rule 8 Accuracy etc of Health Information to be Checked before Use All reasonable steps are taken by ManageMyHealth™ to ensure the information submitted is accurately stored. Human error (either by ManageMyHealth™ staff and agents, by you or any third party submitting information) cannot be easily identified by ManageMyHealth™. Therefore, before using any information all users must take such steps as are reasonable in the circumstances to determine its accuracy. Users must not act if the information appears incorrect. If any user acts without taking reasonable steps to determine its accuracy that user is responsible for their actions and not necessarily the person who provided the information. It is important you maintain the accuracy of your contact information so that you can be contacted at any time.

Rule 9 Retention of Health Information Medtech will not delete your information unless your access is terminated. If your account is blocked because you have abused your access privileges you will be offered the opportunity to obtain a copy of any legitimate health information you have entered. In these circumstances information provided by your Healthcare Provider will not be provided and must be obtained from your Healthcare Provider.

Rule 10 Limits on Use of Health Information Access to your information by you and others is limited to the purpose of your healthcare or well being. Use outside of this purpose is not permitted without authorisation. Our terms and conditions authorise use of aggregated information which has identifying information removed. This aggregated information may be used to improve the quality of the services offered on ManageMyHealth™, for marketing of ManageMyHealth™ and for general ManageMyHealth™ usage analysis or population health statistics. Health statistics will be gathered to allow planning of effective healthcare services within your region. This information is extremely valuable as it allows the limited healthcare services to be targeted to the needs of the population, which in turn potentially provides benefits to you and your family. Medtech does not use your individual account and record information from ManageMyHealth™ for marketing without Medtech first asking for and receiving your opt-in consent.

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Rule 11 Limits on Disclosure of Health Information Initially access to your information will be limited to you and your registering doctor, including other doctors within your doctor’s practice. This will be expanded in later versions to other health professionals you authorise and an optional "trust list" functionality which will allow you to grant access to other individuals involved with your care. Medtech may occasionally hire other companies to provide services on our behalf, such as web site hosting; packaging, mailing; answering customer questions about products and services; and sending information about our products, special offers, and other new services. If we provide personal information to such companies, we only provide the personal information they need to deliver ManageMyHealth™. They are required to maintain the confidentiality of the information and are prohibited from using that information for any other purpose. Medtech may disclose personal information if required to do so by law or in good faith believe that such action is necessary to: comply with the law, comply with legal proceedings served on Medtech or ManageMyHealth™; protect and defend the rights or property of Medtech and our family of web sites; or, act in urgent circumstances to protect the personal safety of users of Medtech products or members of the public. We will not otherwise disclose such of your information that allows you to be identified to anyone without your consent.

Rule 12 Unique Identifiers The primary unique identifier used within ManageMyHealth™ is an email address of your choice, which you have authorised us to use to communicate with you. This identifier may be linked to your National Health Index number, if known, which is allocated to you when you use a service provided by a New Zealand District Health Board such as a public hospital. No other unique identifier is linked to you by ManageMyHealth™. While an email address is globally unique we cannot guarantee that it will always be assigned to the same person. If an email address is no longer used by an individual it is then typically ‘made available’ to anyone else who wants to use it, much the same as a phone number. In the case of children we allow the use of a parents email address. Once an individual becomes 16 years old they become responsible for maintaining their account access by other persons such as their parents. We are aware that over time you may change your email account hence you are allocated a unique system identifier which is inaccessible except by the system.

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Shared Care Record Privacy Impact Assessment

October 2010

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Shared Care Record Privacy Impact Assessment

BSMC Project Initiative Compass Health

Version: 1.1 Created: March 2010 Last Updated: 20 October 2010 Classification: For General Release

Version History

Version Date Change Description Author Initial

0.5 22 March 2010 Draft. Not For Redistribution. JM

0.6 7 May 2010 Draft. For distribution to initial review group. JM

0.7 26 July 2010 Draft. For distribution to second review group. JM

0.8 3 August 2010 Draft. Edits as recommended internally. For distribution to second JM review group.

0.9 9 August 2010 Updated Unique Identifiers information JM

0.91 10 August 2010 Beginning to incorporate feedback received from individuals. JM

0.92 23 September 2010 Second round of feedback incorporated into document. JM

0.93 28 September 2010 Changes including Patients with Impaired Decision making section JM completed.

1.0 8 October 2010 Incorporate peer review information from Kensington Swan. JM

1.1 20 October 2010 Final Spell Checking Complete JM MM

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Contents

1. INTRODUCTION ...... 1 1.1. “BETTER, SOONER AND MORE CONVENIENT” OVERVIEW ...... 1 1.2. REPORT TERMS OF REFERENCE ...... 2 1.3. ASSESSMENT PROCESS ...... 3 1.4. DOCUMENT STRUCTURE ...... 4 2. PROJECT OVERVIEW ...... 5 2.1. TERMINOLOGY IN HEALTH RECORDS ...... 5 2.1.1 Electronic Health Records ...... 5 2.1.2 Shared Care Records ...... 6 2.1.3 Personal Health Records ...... 6 2.2. THE CURRENT STATE ...... 7 2.3. INFORMATION FLOWS ...... 8 2.3.1 General Practice to ManageMyHealth ...... 8 2.3.2 ManageMyHealth to Alternative Care Settings ...... 10 2.3.3 ManageMyHealth to Patient ...... 12 2.3.4 Access Query and Audit ...... 13 3. PRIVACY IMPACT AND ANALYSIS ...... 14 3.1. PRIVACY PRINCIPLES CONSIDERATIONS ...... 14 3.1.1 Rule 1: Purpose of Collection ...... 14 3.1.2 Rule 2: Collection from Source ...... 14 3.1.3 Rule 3: Collection from Individual ...... 15 3.1.4 Rule 4: Manner of Collection ...... 17 3.1.5 Rule 5: Storage and Security ...... 17 3.1.6 Rule 6: Access ...... 19 3.1.7 Rule 7: Correction of Information ...... 21 3.1.8 Rule 8: Accuracy ...... 22 3.1.9 Rule 9: Retention ...... 23 3.1.10 Rule 10: Use of Health Information ...... 25 3.1.11 Rule 11: Disclosure ...... 26 3.1.12 Rule 12: Unique Identifiers ...... 27 3.2. SPECIFIC CONSIDERATIONS ...... 29 3.2.1 Minors and Privacy ...... 29 3.2.2 Opt Off Mechanisms ...... 31 3.2.3 Specialist and Sensitive Services ...... 31 3.2.4 Data Quality for Opted-Out Information ...... 32 3.2.5 Data Quality Issues in Patient Management System Usage ...... 33 3.2.6 Access by People of Patient’s Choosing ...... 34 3.2.7 Ensuring Authorised Access ...... 35 3.2.8 Human Rights: Stigmatisation ...... 35 3.2.9 Community Pharmacists Use of SCR ...... 36 3.2.10 Project Scope Change ...... 37 3.2.11 General Practice Opt-In ...... 37 3.2.12 Ownership and Intellectual Property ...... 38 3.2.13 Patients with Impaired Decision Making Capability...... 38 3.2.14 Use of MedTech32 Confidentiality Flag ...... 39 4. RECOMMENDATION SUMMARIES ...... 40 4.1. OPTING OUT ...... 40 4.2. PATIENT EDUCATION ...... 41 4.3. PROVIDER EDUCATION ...... 41 4.4. MANAGE MY HEALTH FUNCTIONALITY ...... 42 4.5. PROCESSES AND PRACTICES ...... 44 4.6. NON-PARTICIPATING CARE SETTINGS ...... 46 5. PROJECT GOVERNANCE ...... 49

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6. SCR AND MMH TERMINOLOGY ...... 51 7. DESCRIPTION OF AGENCIES ...... 52 8. GLOSSARY OF ABBREVIATIONS ...... 53 9. HEALTH INFORMATION PRIVACY CODE 1994 RULE SUMMARY ...... 54 10. MANAGEMYHEALTH PRIVACY STATEMENT™ ...... 55 10.1. INTRODUCTION ...... 55 10.2. PART A – GENERAL PRIVACY STATEMENT ...... 56 10.2.1 Collection of your personal information ...... 56 10.2.2 Storage of information ...... 56 10.2.3 Security ...... 56 10.2.4 Sharing your personal health information ...... 57 10.2.5 How we may use your personal information ...... 57 10.2.6 How we use aggregate information and statistics ...... 57 10.2.7 Record access and controls ...... 58 10.2.8 Sharing records with applications through ManageMyHealth™ ...... 58 10.2.9 E-mail controls ...... 58 10.2.10 Use of cookies ...... 58 10.2.11 Changes to this privacy statement ...... 58 10.2.12 Enforcement of this privacy statement ...... 58 10.3. PART B – COMPLIANCE WITH THE RULES CONTAINED IN THE HEALTH INFORMATION PRIVACY CODE ...... 59 10.3.1 Rule 1: Purpose of Collection of Health Information ...... 59 10.3.2 Rule 2: Source of Health Information ...... 59 10.3.3 Rule 3: Collection of Health Information from Individual ...... 60 10.3.4 Rule 4: Manner of Collection of Health Information ...... 60 10.3.5 Rule 5: Storage and Security of Health Information ...... 60 10.3.6 Rule 6: Access to Personal Health Information ...... 60 10.3.7 Rule 7: Correction of Health Information ...... 61 10.3.8 Rule 8: Accuracy etc of Health Information to be Checked before Use ...... 61 10.3.9 Rule 9: Retention of Health Information ...... 62 10.3.10 Rule 10: Limits on Use of Health Information ...... 62 10.3.11 Rule 11: Limits on Disclosure of Health Information ...... 62 10.3.12 Rule 12: Unique Identifiers ...... 63 11. ACKNOWLEDGEMENTS ...... 64 11.1. CORRESPONDENCE ...... 64 12. REFERENCES ...... 65

iii

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1. Introduction

1.1. “Better, Sooner and More Convenient” Overview

In 2009 the government commissioned a broad review of the health sector. A panel led by former head of Treasury Murray Horn produced a report, which was to become known colloquially as the “Horn Report” and later, officially as the “Ministerial Review Group Report”. It outlined a number of high level changes that should be made to the health sector [1].

As part of this health sector reform, the Ministry of Health asked for expressions of interest (EOIs) from the primary care sector to illustrate how they could effect change to deliver on the “Better, Sooner, More Convenient” (BSMC) health care vision.

Amongst the almost eighty submissions the Ministry of Health received in response to the EOI were eight Primary Health Organisations (PHOs) who have management services provided to them by Compass Health. All four PHOs in MidCentral district submitted one joint proposal in conjunction with MidCentral DHB and stakeholders. Capital PHO, Kapiti PHO and Tumai mo te Iwi submitted a joint proposal in conjunction with Capital and Coast DHB and stakeholders. In the Wairarapa there is only one PHO in the district and it submitted an EOI in conjunction with the Wairarapa DHB. In total, three EOI proposals were submitted; one for each district to which Compass Health provides management services.

The services provided by Compass Health include information technology and management functions. There were significant information initiatives that act as enablers for a number of the transformational changes outlined within each of the three submissions. The major themes to come through from all three EOIs were:

 working with other clinicians as a patient-centred multi-disciplinary team;  developing and using appropriate clinical pathways; and  the development of the health care workforce.

Information technology is able to support each of these themes.

To enable providers to work as patient-centred multi-disciplinary teams, providers need to be able to have access to shared information about patients. The creation of an electronic shared care record that can be shared through different care settings enables this greatly.

Putting in place better and more efficient referral and transfer of care mechanisms is important to support the development and use of care pathways. Electronic referral mechanisms make transfer of care more timely, efficient and safe. They can better encapsulate decision support and referral guidelines and criteria than paper-based systems.

To support the continued workforce development initiatives, it is important to be able to provide health professionals with convenient access to resources and peer groups. This

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can be enabled through making better use of the web to deliver and store appropriate content for ongoing professional development.

The EOI proposals submitted for the Wairarapa and MidCentral districts where accepted by the MOH. The submission from the Capital and Coast PHOs was not accepted.

Although two of the EOIs were successful and the third was not, it is Compass Health’s intention, with willing DHBs, to implement a number of the key initiatives contained with the EOI and subsequent business cases through all three districts it provides services into – including the Capital and Coast District.

One of the current barriers to clinicians working more effectively in multi-disciplinary teams, particularly across departmental and organisational boundaries is the silos of patient health information stored throughout the health sector. The EOIs outlined a project to begin the health sector on a journey in the respective districts to provide better patient-centric shared information. While the vision of a shared electronic patient record has been a goal with the health sector for many years[1][2][3][4][5], the BSMC project coincided with the imminent launch of a product produced by a primary care software vendor that could begin to achieve these aspirations.

The ManageMyHealth (MMH) product, produced by MedTech Global, offers the ability to aggregate patient information into a summary record accessible by other health professionals without needing a direct connection to each General Practice’s medical database. Access is provided through a secure web-browser connection, to authorised users. Patients also have the ability to access their own record.

The decision to use the MMH product was made due to its immediate availability and integration with the majority of patient management systems used within General Practice in the geographical regions of the BSMC projects.

This report will assess the potential privacy impact of implementing such a system throughout the Capital and Coast, MidCentral and Wairarapa DHB districts.

1.2. Report Terms of Reference

This report serves to:

 identify the potential effects an electronic summary shared care record may have upon individual privacy;  identify the potential effects using ManageMyHealth to provide access to a summary shared care record may have upon individual privacy;  examine how any detrimental effects upon privacy might be overcome;  ensure the project complies with the twelve health information privacy code principles;  propose mechanisms to mitigate any undesirable impacts identified;  illustrate to the public that care and diligence has been taken in considering this project and its impacts; and  inform decision makers about if and in what form the project will proceed.

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The scope of the report will cover the initial two phases of the overall project. These specifically deal with:

 the initial setup of the MMH system to receive patient health data from practices within PHOs; and  the access to the SCR within specific health care settings.

The report will not consider the third stage of the project, which deals with making the secondary care record available to specific health care settings. A specific Privacy Impact Assessment will be undertaken for this phase.

More can be read about these project phases in sections 2: Project Overview and 2.3 Information Flows.

1.3. Assessment Process

The assessment process is divided into five stages:

 Initial Draft Preparation;  First Draft Review and Comment;  Second Draft Review and Comment;  Draft Independent Review; and  Release.

The initial draft preparation will be completed by Compass Health. This will outline the project and consider the project against the privacy rules outlined in the Health Information Privacy Code (HIPC), and address any known issues of particular relevance to the project. This stage focuses on documenting the main points of impact the project may have on privacy. Impacts will have discussion outlined and an initial position outlined.

Once a substantial part of the draft document is complete, this will be released as a first draft to the Compass Health Information Committees, the chairs of the Compass Health Clinical Quality Boards, DHB CIOs, the MedTech Global GM and other selected reviewers. Work will continue on refining content of the draft, in association with collated feedback and comments from the initial review group.

The focus of the first review stage is to:

 ensure all major impacts are documented; and  ensure the position taken by the impact assessment is fair and reasonable and in line with current strategy and thinking at a regional and national level.

A second draft will be prepared and distributed to a wider audience for comment, including appropriate patient and consumer representation, the Office of the Privacy Commissioner, the Office of the Health and Disability Commissioner, the Medical Council of New Zealand, the National Health IT Board, as well as the initial review group. Feedback will be incorporated for a final time. The second stage will build on the focus of the first stage of review, providing a widened perspective on the issues.

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An independent reviewer will then be engaged and will work with Compass Health to ensure that the impact assessment is well balanced, fair and is in line with any technical requirements of privacy legislation. Where any issues are identified, the reviewer will work with Compass Health, DHBs and other key stakeholders to modify the positions to fit legislative requirements.

The final document will then be released. This will be made available as a public document.

1.4. Document Structure

This document has been developed following guidelines supplied by the Office of the Privacy Commissioner’s (OPC) in their Privacy Impact Assessment Handbook[6]. It provides a general overview of the project, its goals and information flows. A reader unfamiliar with the project will be able to gain insight into the aspects to be discussed through the document.

The document goes on to addresses each of the twelve rules included in the Health Information Privacy Code. Each rule has a section that is divided into the three following sub-sections:

 the pertinent parts of the rule are outlined;  how the rule is applied within the current environment is documented; and  the impact of MMH and the SCR is discussed.

If a reader wishes to understand the privacy rules further and in more detail, they are directed to review the Health Information Privacy Code handbook published by the OPC.

Particular points of contention or consideration for the project are then outlined in separate sections. A discussion is provided with each point, outlining how the situations are currently addressed and how MMH and the SCR affect the scenario.

The document finally summarises the discussions in a section outlining a number of recommendations, to ensure the project addresses any privacy impacts raised.

A number of appendices are included for reference.

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2. Project Overview

The project’s objective is to enable registered health professionals to provide better, sooner and more convenient health care to patients by allowing access to a Shared Care Record (SCR) from health care settings outside general practice. Health professionals that have access to more timely and detailed patient information at the time a patient presents may deliver health care in a more efficient and thorough manner. This will ultimately lead to better health outcomes for patients. The mechanism of these improved outcomes are extensively outlined within the BSMC business cases of the Wairarapa and MidCentral districts[7][8].

This project will likely affect the majority of the population that resides within the Wairarapa, MidCentral and eventually Capital and Coast districts. This accounts for 10% of New Zealand’s population, being approximately 430,000 people.

This document outlines three stages in the evolution of the project.

The initial stage deals with the setup of the project and addresses the recruitment of patients for creation of an SCR within MMH. This includes an outline of the mechanism to identify the patients who choose to not have a SCR.

The second stage focuses on delivering access to patients’ general practice records through MMH to other registered health care professionals. These health professionals will work in emergency departments, hospital clinics and wards, afterhours medical centres and other settings.

The third stage focuses on delivering a combination of patients’ general practice record and secondary care records to the same care settings as in the second stage as well as back to General Practice.

2.1. Terminology in Health Records

It is important for the reader to understand the basic terminology of electronic medical records used in this document and project. There are various subtly different terms used to describe electronic patient health records. Each term when used deliberately describes different scenarios and solutions.

2.1.1 Electronic Health Records

The Electronic Health Record refers to a full health record for a patient that is held in electronic form by a third party, and can be amended in real-time by appropriate health professionals and carers. This term is used internationally and is generally well understood by health informaticians. It is sometimes used interchangeably with the terms Electronic Patient Record and Electronic Medical Record.

This record typically would be the sole health record for the patient. Health Professionals treating a patient would use the record directly, with no need for any ancillary notes or

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records. It represents a complete and detailed longitudinal medical record for the patient in all care settings in which they receive health care.

While an Electronic Health Record allows all health professionals involved in patient care to work from the same set of information, this project does not intend to attempt to create such a record.

2.1.2 Shared Care Records

A Shared Care Record (SCR) is what this project is proposing to create and provide to health professionals and patients. It is also the model the National Health IT board have indicated will be introduced nationally by 2014.

A Shared Care Record refers to a summary record of health care information. It contains only significant summary and basic demographic information. Internationally, the term Summary Care Record is used to describe such a record. In New Zealand, the use of the term “Shared” rather than “Summary” has been coined most recently by the National Health IT Board in their Draft National Health IT Plan. This document will use the emerging New Zealand terminology.

A Shared Care Record can be used by health professionals to share information about patients and their treatments. Typically, the shared care record would be sourced from a complete medical record held by each specific health professional treating the patient. A health professional would use their own system for detailed information on the patient’s history and treatment information.

2.1.3 Personal Health Records

A personal health record is a collection of a patient’s health information held and set-up by the patient themselves. In its most basic form, this can be done in a paper-based mechanism. Within the last few years, large computing providers, such as Google and Microsoft have provided tools that enable health consumers to set-up their own electronic record.

Most notably in New Zealand, a company called Doctor Global had started providing electronic Personal Health Records to patients almost a decade ago.

A Personal Health record is separate and distinct from the Shared Care Record. MMH provides an interface to both of these types of records. This project is mainly focused on the aspects of MMH that can be used for the shared care record.

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2.2. The Current State

Sharing of patient information between health professionals already occurs. The three most common scenarios of this between care settings are:

 either through a referral process, usually including a form detailing relevant or pertinent information;  through discharge summaries that are supplied when patients are discharged from services; or  verbally through one clinician making contact with another to discuss particular aspects of a patient’s case.

At times, verbal transfer is used in conjunction with either of the other two – often as a result of the treating health professional’s need to clarify aspects of information contained on a referral form or discharge summary.

Referral information is currently only useful in settings where patients do not self- present. More often than not, admissions to hospital are not planned (referred to as acute). In Palmerston North Hospital in 2009, 82% of the 37,000 ED presentations were through self-presentation. It would be reasonable to presume similar proportions in other hospitals within Wairarapa and Capital and Coast districts. This represents a large volume of patient presentations where patients do not have pre-planned accompanying health information in the form of a referral letter or form.

Obtaining patient information verbally from general practitioners, usually over the phone can also be difficult for other health professionals. Often, primary health care professionals are not available at the times other health professionals working within acute and emergency settings need to speak to them, as they tend to work during extended business hours and patients present to EDs 24 hours a day, 7 days a week.

When unplanned presentations to health services outside of general practice do occur, patients can often recount important or recent medical history. This method of information collection is valuable in all care settings. It can be couched in lay- terminology or not be specific enough to be entirely useful to treating health professionals. This is particularly true where patients are disoriented or unable to communicate clearly.

In situations where patients are referred to outpatients and for planned admissions, they continue to be managed in general practice until they are seen. Delays in seeing patients in these settings are common. This leads to the information that may accompany the patient at the time of referral being potentially out of date as management in general practice has progressed with the patient over time through the ordering of lab test and treatment trials.

All of these situations lead to inefficiencies in the use of health professionals’ time, information that is less detailed than it could be and ultimately delays for patients in triage or treatment. Health professionals presently do very well with the limited information they are able to collect. This project aims to help them gain more complete information on a patient’s medical history in these situations.

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2.3. Information Flows

There are three main flows of information within this project:

 General Practice to ManageMyHealth;  ManageMyHealth to Care Settings Outside General Practice; and  ManageMyHealth to Patient.

2.3.1 General Practice to ManageMyHealth

The first stage of this information flow involves the recruitment of patients into the project.

The PHO Registers will be used to identify patients who are enrolled within a PHO taking part in the project. Each general practice will be supplied with query templates that will allow them to generate lists of patients who have information that may be sensitive. This will allow them to streamline the review of sensitive data, prior to that data being included for upload into a patient Shared Care Record.

A communications plan will be executed, to inform health professionals and patients of the intention to include all PHO enrolled patients in the Shared Care Record project. This communication will also outline their ability to opt-out of this process.

Direct Patient Visit to Patient GP / Practice Nurse Opt Out By Opt Out Form By Phone

PHO

Shared Care Record

NHIs Information List of Opted Out Patients

PHO Patient Register Database

Figure 1: SCR Creation Recruitment

In order to opt-out of the project, patients will be able to make contact with the PHO via a free-post mailing address, a toll-free phone call, or they may choose to visit their general practice. For PHOs dealing with patients over the phone, some basic identity verification mechanisms will be used to ensure those patients making contact with the PHO are who they claim to be. Patients that have been opted out of the system will be

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sent a letter confirming this, and advising them of the process should they wish to opt-in at a later date. While establishing identity over the telephone is not the gold standard of security, it is sufficient for allowing a patient to opt-out of the project. This process does not grant them access to any information held within a shared care record.

Patients wishing to gain access to their own Shared Care Record will be required to visit their General Practice and to have a valid and accessible email address. They will need to meet face-to-face with a practice nurse or GP in order to access their own SCR. Staff from the PHO could be made available to undertake this function at each practice if demand for this service was to become a problem in the initial recruitment period. Patients will be given a print-out of their password at the time they sign-up and present. If they lose their password at a later date, they are able to have it reset and have a new password sent to their nominated email address.

During this recruitment phase, the PHO will be responsible for maintaining the list of patients who wish to opt-out of the project.

A list of NHIs will be extracted from the PHO Register held by the PHO. Those patients who have chosen to opt-out of the project will have their NHIs removed, and each General Practice will receive the filtered list of NHIs that are to be loaded to ManageMyHealth.

Once the initially recruited patient information is uploaded, a period of several weeks will be made available for health professionals in General Practice to check the information on their patients that has been uploaded to MMH. This period will enable them to review information being uploaded to ensure it is appropriate and that their patient management systems are configured correctly. This will happen before patients are able to review the information held within their Shared Care Record.

Once the GPs have had ample time to review their records, patients will be given access to their own record, prior to it being made available to other health professionals in care settings outside General Practice. This will enable patients to check that they are comfortable with any information included within their personal Shared Care Record, if they choose. If patients are not comfortable with this information, they will be able to either opt-out of the project and have their Shared Care Record removed, or visit their GP and have the information corrected or adjusted accordingly.

After the initial recruitment phase, the project will switch from an opt-out mechanism, to an opt-in mechanism. This will require a patient to attend the General Practice and indicate to their health provider that they consent and wish to have their information uploaded to MMH. This applies to patients new to the region or general practice, and for any patient that has previously chosen to opt-out of the project.

Information is transferred from the general practice patient management system via a secure internet connection (SSL) to the MMH server. The level and mechanism of security for information transfer is similar to that used in the banking industry for internet banking.

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General Practice

Patient Opt Out “Confidential” Filter Filter

Figure 2: SCR Maintenance

The second stage of this information flow is the maintenance phase, where new information is added to the SCR. This is usually done when the patient presents to their General Practice, or when new information is added as a result of a recent presentation (such as new lab result information being returned from the laboratory). Only information that has not been marked as “confidential” for patients who have an existing SCR is sent to MMH.

2.3.2 ManageMyHealth to Alternative Care Settings

When a patient presents to a care setting in which MMH is available, such as the Emergency Department, the treating health professional should establish verbal consent from the patient to view their Shared Care Record. Evidence shows that even with widespread and targeted publicity about shared care records, the majority of patients don’t recall such publicity at a later date[9].Obtaining such consent has been noted as one of the success factors in Scotland’s Emergency Care Summary[10] and further safeguards against any patient who is unaware that their Shared Care Record is accessible in the particular care setting in which they are presenting.

Once consent to view the record is established, the health professional will need to determine the patient’s National Health Index (NHI). In most care settings, this step would be routinely done in order to appropriately association health care information with the individual. Locating the patient’s NHI can usually be done by using the patient’s name and date of birth. This is a separate step to searching for the patient within MMH.

Once the NHI is located the health professional will then be able to log in to MMH and look at the patient’s SCR, if it exists.

The most basic form of sharing of patient information is through a secure web browser session (shown in Figure 3: SCR Sharing in a Hospital via a Web Browser). The internet security settings and other security requirements are discussed in section 3.1.5 of this document.

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` Patient Emergency Patient Department Name Hospital Patient Administration Clinical System Info

Health NHI Professional

Shared Care Record Secure Web Browser

Figure 3: SCR Sharing in a Hospital via a Web Browser

Figure 4 shows access to the SCR via the Hospital Patient Administration System (PAS). In this case the PAS has a direct interface to MMH. The health professional still has to log in to the PAS, and their access to the SCR is still recorded and audited. Such an arrangement in this care setting reduces the complexity to health professionals needing to navigate scores of systems all containing patient information. In this situation, the health professional does not need to undertake a two step process of identifying the patient’s NHI separately to looking at their record. Access to the PAS, as well as access to MMH is logged and audited by the hospital and SCR project respectively.

` Patient Emergency Patient Name & Department NHI Hospital Patient Administration System

Secondary Clinical Info Health & Shared Care Record Professional

Figure 4: SCR Sharing in Hospital with Systems Integration

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The care settings where the SCR will be made available will include:

 Hospital Emergency Departments;  Hospital Outpatient Departments;  After Hours Medical Centres;  Paramedic and Ambulance Services;  General Practice;  Elderly Care Facilities; and  Community Pharmacies.

The summary information available to providers in these care settings will include:

 medical classifications in the form of Read Codes;  allergies;  prescribed medications;  lab results;  medical warnings (contained within PMS);  immunisations; and  recalls.

Different views of information will be available in different care settings. For example, within an Emergency Department, all the summary information listed above would be available. Within other care settings, such as community pharmacy, only prescribed medications and allergies may be available. Exactly what is seen in each view needs to be agreed further by the appropriate professional groups.

2.3.3 ManageMyHealth to Patient

` Shared Care Record Patient or & Secure Web Advocate MMH Features Browser

Figure 5: SCR Access By Patients

Once a patient has a SCR within MMH, and once they have obtained a MMH login, they will be able to access their own SCR. The PHO will facilitate a process to assign logins for patients in the initial recruitment phase to alleviate a potentially large amount of administrative burden upon General Practice. This will require appropriate identify verification procedures.

In the maintenance phase of the project, patients will obtain their login information by attending their general practice – usually at the same time that they would opt-in to the system.

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2.3.4 Access Query and Audit Patients will have access to their own SCR, including an ability to review the access history of the SCR by others. The PHO will facilitate an audit process where patients have queries or concerns regarding the access to the record. Patients will be able to initiate a review of access to their patient record via a toll-free phone number. The investigation will consist of reviewing the patient’s SCR access record, having appropriate health professional peers investigate any clinical context associated with the accessing of the patient record including obtaining background information directly from health professionals. This process will be run in conjunction with existing clinical governance such as already established Clinical Boards. Where the patient requests it, a summary of findings, explanations and any educational material will be provided to the patient addressing their concern or request.

PHO

PHO Register

Patient Name

NHI

Patient Enquiries Privacy Auditor Care Record for Patient

Shared Care Record HealthProfessionalsAccessing Shared Access History Findings / Explanation / Education

Figure 6: SCR Access Query Audit Process

Any non-clinical staff completing an audit process will be unable to access any clinical information. As such, having an auditing process for these auditors would be unnecessary. All clinical staff, even in the course of conducting an audit, would be subject to the same audit process.

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3. Privacy Impact and Analysis

3.1. Privacy Principles Considerations 3.1.1 Rule 1: Purpose of Collection

Rule Rule 1 of the Health Information Privacy Code (HIPC) requires that information be collected only for a lawful purpose that is related to the function or activity of the health agency.

Current Currently, health professionals record information on patients’ medical history and treatments. They do so primarily to provide a record of their medical care and information pertinent to the decisions made in doing so. This record has uses in the ongoing treatment of the patient, as well as providing a basis for any future medico-legal need. They also record the information for the purposes of sharing relevant information with other health professionals at the time of referral to other services to ensure a reasonable standard of continuity of care to the patient. In some situations the information is recorded for statutory or statistical purposes.

Impact In terms of collection of information, this project does not change any of the existing purposes of collecting the information. It will have no impact on the purpose for which information is collected from a patient.

3.1.2 Rule 2: Collection from Source

Rule Rule 2 of the HIPC addresses the need for health information to be collected as directly from the source of the information as possible. In most cases, this is directly from the individual or as a direct result of the individual consenting to clinical tests.

Current In almost all instances in General Practice at present, information is collected directly from the patient. This is usually done with the health professionals and the patient in either a face-to-face, or telephone setting. There are exceptions as to when the information can be collected from someone other than the patient and these exceptions are provided for in Rule 2 of the HIPC as, in some situations, information is sourced from parents, guardians or caregivers.

Impact This project does not change the source of the collected information. The patient still presents to their health professional who collects the information in the same way as before. Other health professionals accessing the shared care record would then be viewing information entered by the health professional responsible for the collection of it directly from the patient themselves.

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3.1.3 Rule 3: Collection from Individual

Rule Rule 3 addresses the need for those collecting the information to ensure that the individual is aware of the information flows and the purpose of those flows. Its intention is to provide autonomy to the individual in the control of their health information [11]. Rule 3 ensures awareness by the patient of what is happening with their health information. The following sub-rules are particularly relevant to this project:

 who the intended recipients of the information are (3-1-c)  the agency that will hold the information (3-1-d-ii)  whether or not the supply of information is voluntary or mandatory (3-1-e)  the consequences for that individual if all or any part of the requested information is not provided (3-1-f)  the rights to access to, and correction of health information provided by rules 6 and 7 (3-1-g)

The HIPC indicates that although sharing information with other pertinent health agencies involved with the patient’s care is good practice, it should only be done with the individual’s knowledge[11]. This rule is intended to assist the awareness of patients to what is happening with their health information, not to require consent from them for it to happen.

Current Currently, the agency that holds the health information for patients is the patients’ general practice. This is often done on the same site as the practice itself. In some instances, practices sub-contract other providers to maintain their computer systems. In these instances, the sub-contractor is acting as an agent for the practice itself. There will be contractual agreements in place that ensure the sub-contractor adheres to the rules under the HIPC. This will be the responsibility of the General Practice.

The supply of most information to a provider in the care setting in general practice is voluntary. Patient’s can choose to disclose particular details if they wish.

Patients are made aware that they have the right to access their health information through brochures and posters displayed in general practices.

Impact This situation changes slightly with the introduction of this project. The primary storage of the patient’s medical information remains within the general practice itself. This information, in summary form, is then transferred to a third party organisation responsible for storing and providing appropriate authorised access to that information. This third party organisation may also sub-contract its services for storage to another agency. The HIPC[11] outlines on page 22 that the need to make the patient aware of the details of who is holding the information is so that “they can exercise their rights of access” to it.

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The need to know who is holding the information, for the purposes of accessing the information is for all intents and purposes the general practice still. The information being held by the other parties are only acting as agents for the practices and, as such, only hold a copy of the information that the practice generates. It will still remain the responsibility of each organisation to maintain contracts with their sub-contractors to ensure the sub- contractors adhere to HIPC rules.

The supply of any information by the patient to the General Practice is voluntary. This project changes the decision-making process that a patient and their health professional must make with regard to the information that is shared. Presuming the patient decides to disclose information to their general practitioner, they must also decide whether they wish to have that information disclosed to other health professionals by having it included in their SCR.

This places an additional burden upon the health professionals counselling patients. They must make the patient aware of the consequences of including or withholding information from their SCR.

The consequence of not supplying information within one’s SCR is relative to an improved level of care others will experience. This project aims to improve the level of patient care within care settings outside general practice. It does this by allowing health professionals’ access to patients’ SCRs. This will ultimately give them better and more complete health information on patients. Patients that choose not to supply information within general practice may experience no or little improvement in outcomes due to the benefits associated with additional information supply compared with those patients that do supply information.

Health professionals are obligated to disclose some information for some conditions or situations, usually to national registries. This mandatory disclosure to these registries does not change. The patient, although not having the choice whether this information goes to such registries, would still have the choice to have the same information excluded from their SCR. Mandatory disclosure does not affect a patient’s ability to control what goes into their SCR. In such circumstances, the health professional will still counsel the patient as to the possible consequences of their decision to not include such information within their SCR.

Posters and brochures would continue to be produced with updated information to help inform patients on what happens with their health information and their rights within that.

In order to address and mitigate some of these changes and the impacts that they may potentially have on the patient, it is advisable that four things are done as part of the project:  an initial public communication plan is executed, including public meetings;  practices are supplied with posters explaining a ‘first layer’ notice of the impacts of this project on this aspect of the HIPC. Practices

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would be required to display these posters in a prominent position within their practice;  practices are supplied with brochures outlining additionally detailed ‘layers’ of the impacts of this project on this aspect of the HIPC. Practice would be required to make these available to patients wanting them within their practice; and  a provider communication plan is executed, including provider meetings and training, allowing providers to council their patients to make informed choices about the project.

3.1.4 Rule 4: Manner of Collection

Rule Rule 4 addresses the need to ensure that information is collected in a fair manner.

Current Health Professionals have clinical and business processes for collecting information on patients during the course of their interactions. These processes differ depending on the type of each health professional (doctor, nurse, counsellor etc). These processes are already governed by professional quality standards and appropriate statutory registration bodies and professional groups. However, it is important to note that this rule is not just limited to the collect of information directly from a patient, and includes information collected from a parent or from another health professional.

Impact The collection of information for this project does not differ from the collection of information in the course of normal clinical practice within general practice.

3.1.5 Rule 5: Storage and Security

Rule Rule 5 addresses the need for agencies holding the health information to secure it appropriately. No absolute measures are outlined, as the appropriate level of security depends on the sensitivity of the information.

Current A patient’s medical history is stored within the general practice systems. Appropriate safe guards to prevent against physical, operational, technical and communication threats already exist. The Health Information Security Framework Essentials and Recommendations[12] is an appropriate document for practices, PHOs and other health agencies storing health information to consider and implement where appropriate.

Almost all general practices are connected to the internet, usually by a broadband internet connection. This internet connection is used primarily for the use of normal business email, web browsing and for creating secure messaging gateways to communicate electronically with other health professionals (most often using the HealthLink product).

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The terminology “surface area” is often used to describe how much potential there is for threats to attack the security of a system. Having an internet connection is a genuine security risk. The associated surface area for attack it provides is extremely minimal if it is configured correctly. Having an internet connection has a high business benefit which outweighs the associated risks.

Impact This project increases the surface area of the systems that hold patient’s health information. The aggregated record is stored in a manner that is accessible over the internet. It will be secured with a single-factor authentication mechanism, requiring anyone wishing to access it have a matching pair of username and password. The risk of interception of data is low with the use of securely encrypted web browser connections. The risk of an unauthorised user guessing a provider username and password combination is again low, as long as passwords that are used are kept secret and relatively strong. All reasonable safeguards will be taken in relation to this project.

The risk with the most likelihood of occurring is one where a patient or provider compromises the system security by inadvertently or deliberately giving others their username and password. To mitigate this, it will be important within the patient information to stress the importance of keeping their username and password safe and to only give it to other people that are acting as their guardian or advocate if they wish to. It will also be important to ensure that health professionals are educated fully as to their responsibilities and measures that they need to take to ensure the safety of the system.

Organisations with staff accessing the MMH system will be required to ensure that the employment agreements that they have with their staff have appropriate privacy clauses. These will include statements that actions associated with compromising network security or patient privacy are considered serious misconduct. Organisations will also be asked to ensure that their network, processes and procedures meet a minimum security standard (based on HISO’s recommendations[12]).

Where staff have been found to have carried out serious misconduct, the most likely outcome within New Zealand organisations is the dismissal of that staff member. A finding of serious misconduct due to a breach of privacy would also likely result in the incident being reported to the appropriate professional body. This may also result in further sanctions upon that individual extending beyond their current employer. Such a deterrent should be sufficient to dissuade the majority of staff to not engage in behaviour that could lead to this.

A Project Operational Team will facilitate audits of access to the system. Every time a health professional views a patient record, access to that patient record is logged by the MMH Project Operational Team. This type of audit will be done at random on a sample of health professionals and patients. In undertaking audits, the Project Operational Team will not have access to clinical information and will be assessing patterns of access only. Where further investigation of irregular access is required, such investigation will be

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carried out by fellow health professionals. This mechanism is not intended to act as a front-line mechanism to prevent unauthorised access, but rather act as a monitoring and deterrent mechanism. As such, it will be important to remind providers from time to time that their access to the system is being audited.

The Project Operational Team will ensure that there is suitable policy and procedures established to deal with privacy investigations, requests and breaches.

Patients who choose to access their own record through the portal will also have the ability to audit who has accessed their record via an independent process, run jointly by the PHO and DHB through the Project Operational Team.

Health professionals outside the primary care setting will not have direct access to the patient record except through the use of a patient’s NHI. Locating a patient’s NHI is relatively easy, but this step prevents ‘trawling’ of records based on name from within MMH directly.

3.1.6 Rule 6: Access

Rule Rule 6 pertains to a patient’s right to access their own health information, and the need to inform patients of their rights under Rule 7.

Rule 6-2 sets out the requirement of the patient to be informed that they are entitled to request the correction of information held on them.

Rule 6-1-b pertains to a patient’s right to know whether an agency holds information on them.

Rule 6-3-a also sets out the right for health professionals to refuse a request for access to a patient’s health information. The Privacy Act sets out in sections 27 – 29 a number of reasons why access to a patient’s personal health information could be refused to him or her. As such, this scenario needs to be considered.

Current There is no unified health record in New Zealand at present. If patients wish to view their health information, they must make contact with the appropriate heath care organisation. In the case of accessing their health information held in General Practice, they need to make contact with the appropriate general practice. They may need to book an appointment with their health professional, or request a print-out of the electronic information that is held for them.

Such requests usually require a person-to-person interaction, at which time, the patient can be advised that they are entitled to request that information be corrected – which must be done according to sub-rule 6-2[11].

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General practices remain the stewards of patient health information in the current situation.

Under certain circumstances, health professionals are entitled to withhold information from a patient after an official request from the patient for it. Where they wish to do this they make this judgement after the patient makes the request for information. They have twenty working days after the receipt of the request to make this determination. General Practice has existing processes to deal with this situation.

Impact Patients will be able to access their own summary health information held within the SCR directly, once they have gone through appropriate identity verification checks and are issued with a username and password for MMH. They will also need access to a computer and the internet.

The existing mechanism of requesting information directly from the appropriate general practice will still be available. This may be preferred by those patients that don’t have access to a computer or the internet, or do not wish to obtain a username and password for their record or for those that wish to obtain more detail on the medical information held on them.

Sub rule 6-2 says that the individual, when given access to health information, must be advised of their right to correct that information. There remains a requirement to have a face-to-face meeting in order for a patient to obtain a login to MMH. This would be the most appropriate time to ensure that the patient is advised of their rights in this regard.

Clearly, when a patient is first given their username and password for MMH so that they may access their own SCR, they should be advised of their rights to correct information. This should be built into the practice or PHO level process of providing access to MMH.

It would be possible to display such information each time a patient accesses the MMH system. It is important that such information does not detract from the user experience of the system. The Project Governance Group should debate, in conjunction with discussions with MedTech as to whether MMH should carry such information routinely displayed to the user.

For a health professional to withhold information from a patient, the health professional must make this judgement at the time information is entered into their patient management system or prior to the patient requesting a username and password for MMH to their own record. Although there will be a limited ability to retrospectively flag items of information as “confidential” and have them removed from the SCR, there is no easy way for a health professional to know whether the patient has already sighted that piece of information.

If a provider wishes to make only a portion of a patient’s record unavailable to them, they can do so by marking the relevant pieces of information

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“confidential” within the MedTech 32 system. However, this also makes this information unavailable to other health professionals.

If the provider has determined to only make some of a patient’s health record available, the patient may still request that the information withheld is disclosed. A provider should only withhold information or flag information as “confidential” if one of the grounds for refusal to release information applies under either the HIPC or Privacy Act.

Rule 6-1-b pertains to a patient’s right to know whether an agency holds information on them. The Project Operational Team will have the ability to field such requests within the limited scope of confirming or not whether the MMH patient portal has information on that individual. Any non-clinical staff that undertake this function should explicitly be prohibited from viewing any clinical information as part of this process. They only need to be able to see enough non-clinical information to accurately establish whether a record for any individual exists. In line with procedures in place, patients will also be able to access their information by being given a username and password. If the patient wishes to make a request to have information corrected, they will still be able to do so directly with their general practice.

3.1.7 Rule 7: Correction of Information

Rule Rule 7 outlines the patient’s entitlement to request the correction of information held on them. It also outlines an agency’s obligation to correct information when it is wrong.

Where an agency receives a request to correct information but they do not wish to correct the information, the agency is obligated under rule 7-3 to attach a note to the patient record outlining the request and subsequent refusal.

Current Normally within general practice, this would be done within the daily record, or as an attached note to a particular data item. The patient would, after requesting and sighting their medical information make a request to the general practice to have an item of information corrected.

The practice might arrange an appointment with the patient and the health professional responsible for the information. The health professional would then either be able to correct the information, or decide that the information was accurate and not need correction. In the latter case, they would usually make a note within the PMS daily record, as to the patient’s request, subsequent refusal and grounds to not change the information.

In the case where the correction was not made, this decision would be communicated to the patient along with the reasons why. It should also be recorded that the patient was advised of their right to make a complaint to the Privacy Commissioner about the decision.

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Impact As per Rule 6, facilitating better access will empower the patient to ensure that their information is correct and accurate and gives them the ability to review that any correction has occurred.

Correction of the record directly within MMH itself is not possible. The system is an aggregator of information, rather than an information repository in its own right. Correction will be sought at the source general practice in these cases.

The Project Operational Team will be responsible for directing patients to their general practices to get the information corrected.

This project does not intend to publish the daily record as part of the SCR. Particular data items within MedTech such as classifications allow the inclusion of “notes”, which are included with the SCR data. Providers will be educated to ensure that they record any disputes to the accuracy of information within the “notes” section of these data items. The classifications data, which may contain diagnosis information that is a result of opinion rather than fact, is the most likely data that would have requests for correction and refusal. Most other data items, such as prescribed medications, lab results, immunisations, recalls and allergies are medical facts and are clearly either accurate or inaccurate.

3.1.8 Rule 8: Accuracy

Rule Rule 8 requires information to be accurate to a level commensurate with that for which it is being used.

Current At present, providers need to record information in patient’s health records in an accurate and precise manner to ensure that they meet their duty of care. They need to also do so to ensure from a medico-legal standpoint there is sufficient information to document and justify their clinical decisions. They already share this information with their colleagues that work within the same general practice when they are on leave and other health professionals must see their patients. They also share parts of this information with other health professionals outside of their general practice when they refer the patient to other health services.

When referring the patient to other services, the health professional in general practice is able to contextualise the information they share, or when necessary elaborate. This is done at the time the referral information is prepared.

Impact This project intends to make summary information available to health professionals working outside of the general practice setting. The summary information available is categorised information, rather than free text. Clinically subjective or objective daily records are not included as part of this SCR project.

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Providers use the categorisation systems within the PMS in slightly different ways. This introduces some issues of data quality. Usually within General Practice, context can be provided within the clinical notes. This project does not intend to share the clinical notes, meaning that some of this context may not be available to health professionals accessing the SCR. Each of the categorisation items can however have notes attached to them. These notes are intended for short pieces of information that are associated with that particular item (i.e. a diagnostic code).

Along with the duty of care of the health professional in general practice to record information, there is also an onus on the duty of care of the health professional using the information in other care settings. It is important that health professionals using the SCR understand its limitations.

The intent of the summary medical record is not for it to be used in isolation, but in conjunction with existing practices around information collection, including a full history and physical examination. The SCR should always be considered an adjunct to good clinical history-taking, and used to clarify or to prompt for additional information from the patient. Providers need to be given this message clearly, and this will be included prominently in all provider training and education around using the SCR.

Patients may often recall non-specific or imprecise details about their recent medical care for instance. The SCR would enable providers to clarify the specific details of conditions or medications that patient may refer to. It may also prompt the current health professional to ask the patient additional questions about parts of their medical history that they have omitted where the health professional believes it may be relevant.

3.1.9 Rule 9: Retention

Rule Rule 9 states that a health agency must not hold health information longer than is required for the purposes for which it may be used. The purpose of the information being collected in the SCR is to provide other health professionals outside the patient’s general practice setting with relevant medical history.

The Health (Retention of Health Information) Regulations 1996, states that health information should be retained for a minimum period of ten years. It does not stipulate a maximum period.

Current With electronic records, a general practice would hold a copy of a patient’s record indefinitely, even once they are deceased (the patient record would be marked as such, but it would not be deleted or removed from the system). Even in the case of a patient transferring General Practices, the incumbent practice would continue to hold a copy of the medical records, even when those records are “transferred” to the patient’s new practice.

Impact There are potentially four situations in which the retention of information within MMH must be considered. They are if the patient:

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. dies; . chooses to no longer have an SCR; . moves general practices within the District; and . moves general practices outside the District.

For the purposes of this project, MMH is being used to deliver a SCR. MMH also has a component that provides for a Personal Health Record for the patient, which allows the patient to record their own information about their health. This impact assessment addresses the use of MMH to deliver and store the SCR information only. The aspect of the patient’s record that pertains to their Personal Health Record should be covered under existing MMH privacy assessments and statements.

The aggregated record is a reflection of the information stored within general practice and, as such, in its present form, would hold patient records indefinitely also. This situation may not be desirable from a privacy standpoint, as the purpose of the aggregated record is to provide medical care to the patient (rather than a record of their treatment for legal or medico-legal reasons – which may be a justification as to why a general practice would retain medical records long past a person’s death). Once a patient is deceased, there should be no reason for their medical records to remain accessible through MMH. Such records should be deleted from the MMH system.

This project proposes to operate on an opt-out basis, to maximise coverage for the population. A patient who has not opted out of the project initially should be able to choose to have their record removed from MMH at a later stage.

This process would be best managed through the Project Operational Team established for this project. The Project Operational Team would be responsible for coordinating and ensuring a patient’s record was removed from MMH. They would also be responsible for reporting back to the patient once this was done.

Should any one practice, PHO or DHB choose to discontinue using MMH to provide access to the SCR for health professionals, there should be a mechanism by which patients are informed of this decision, and given appropriate opportunities to have their information removed or retained as they wish. Where a PHO or DHB chooses to discontinue using MMH, each practice should be given the opportunity to retain their patient information within MMH, while individual patients should still be able to exercise their right to have their information excluded from MMH.

If a patient moves from the district, their SCR information within MMH should also be removed. This project covers PHO enrolled patients, and once a patient is no longer enrolled within the PHOs involved in the project, they should not have their information stored within MMH.

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3.1.10 Rule 10: Use of Health Information

Rule Rule 10 limits a health agencies ability to use health information for purposes other than what it was collected for. In terms of this project, the purpose of collecting the health information is to aide in the provision of medical care to the patient.

Current Health Information is collected at present within various care settings. That information is primarily collected for the purpose of providing clinical care to the individual. It is also used for reporting on health services to health funders, almost always at an aggregated and non patient-identifiable level. This use is outlined in patient enrolment information that the patient cites and signs every three years.

The PHO usually functions as an aggregator for General Practice and collects and reports health statistic information to funders on behalf of the General Practice. In this manner, the context of information is understood. The general practitioners hold contracts with the PHO which obligates them to supply the information and the PHO is obligated to use the information in a defined manner.

Impact The purpose of the SCR is to provide health professionals involved in a patient’s care better access to summary health information on that patient. In doing this, it is intended to allow the patient to experience improved care.

Use of patient SCRs, by anyone other than health professionals, for any purpose other than providing direct clinical care to a patient must be explicitly forbidden. Any information required for the purposes of reporting is already collected by the PHOs, made anonymous, aggregated and reported. Allowing funders or researchers to directly report against such a data set introduces significant risk, where funders or researchers may not understand the limitations or context of the information at which they are interrogating. There is the potential for a breach of the HIPC to occur where the patient was not made aware that information may be passed onto other parties or put to a use which was not disclosed.

While the consent of the patient could be sought, this is an administratively time consuming and costly option. Therefore, a general prohibition on the use of the information for other purposes is the most workable solution.

MedTech’s latest privacy statement outlines how they intend to use the information aggregated within MMH. The statement appears to be contradictory, within the first paragraph limiting the use to the purposes of the individual’s healthcare and well being. Subsequent paragraphs outline MedTech’s use of the individual’s health information, albeit in an aggregated form for the purposes of marketing and for providing health statistics at a population level.

Regardless of this, it will be prudent for the PHOs, on behalf of the general practices to reach a contractual arrangement that allows MedTech Global to use the information only for the purpose of serving that information to

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authorised users (providers or patients) in a patient-centric summary medical record, and in an anonymous form for marketing of their product.

It should be explicitly forbidden for information contained within MMH to be used for the purposes of providing to any party population health statistics at a national or regional level. Such a process could undermine General Practice’s trust in supplying information for monitoring and contractual reporting purposes. A breakdown in trust may adversely affect health professional’s willingness to record and send information to MMH. This function is presently carried out through PHOs and the status quo should be maintained here. There is often a high degree of analytical processing that needs to go into providing population health statistics to ensure the highest possible level of data quality. This is particularly important when using routine clinical data that is not being recorded for population health reasons as the data often requires high degrees of normalisation and cross-checking before being presented in a reasonable form. PHOs also have mechanisms in place in which to feed information back to their member practices prior to reports being released to funders or into the public domain, as a matter of courtesy.

This rule also raises the question of the matching of data within MMH. Data matching should be done only on the patient’s NHI and only for the purposes of combining health information for the purposes of providing health professionals with a clinical record. Such a scenario would be matching the health data between MMH and a secondary care system to provide both a combined primary care and secondary care record. Matching SCR data with any agency other than a DHB, PHO, General Practice or other health care provider should be expressly forbidden.

3.1.11 Rule 11: Disclosure

Rule Rule 11 limits the disclosure of information. There are a number of scenarios in which disclosure is permitted.

Current Information collected within general practice is disclosed to other health professionals in the course of referral letters and phone conversations between treating clinicians. Patients are aware of the intent to use this information in such situations.

The health professional can make a decision at the time of disclosing the information, either in a referral document or phone call, as to what pieces of information they should disclose. They may make clinical decisions as to what parts of a patient’s medical history are irrelevant to a particular referral, and choose not to disclose those items of information.

Impact The question may be raised as to whether the patient intended for the information collected to be used to provide care outside the setting of the general practice in which it was collected. Is this any different from a new doctor presenting at a practice that had not previously worked there, and them requiring permission from the patient to access their records?

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This project means only to change the mechanism by which the information is shared, not whether it is shared or not. The ‘gate keeping’ mechanism for the disclosure is changed. Disclosure is currently only of a subset of information that the collecting health professional decides is pertinent to disclose to other treating health professionals. This changes because treating health professionals will have the ability to view all information contained within the patient’s SCR (that the patient has not explicitly asked to be marked as confidential), whether it is pertinent to the referral or not.

All health professionals that are given access to this record through this project are required to be registered with a professional body. As such, they are obliged to maintain moral, ethical and professional standards at all times. This obligation should go some way to mitigate the risk of any perceived misuse of access to the whole SCR.

In some care settings, where it is clear, an even more limited subset of information is necessary, such as in Community Pharmacy, MMH will limit the view of the patient SCR to pertinent fields. This will also protect disclosure of information not relevant in particular care settings.

For the purposes of this project, disclosure to other health professionals is permitted as the disclosure is one of the purposes in connection with which the information was collected, namely the provision of medical care to the individual. If a patient consents to treatment within a health care facility, they are, in effect, consenting to disclosure of their SCR to health professionals treating them within that facility.

3.1.12 Rule 12: Unique Identifiers

Rule Rule 12 limits the abilities of health agencies to assign unique identifiers to patients.

Current Use of the NHI is nearly ubiquitous amongst the health sector in New Zealand, and has been so for the past 20 years. It is used on almost all paper and electronic documentation sent around the health sector as a means of uniquely identifying a patient. National Health Index numbers are assigned to patients sequentially when the patient first has contact with the health system. This results in NHIs being completely arbitrary. Because of this, some people mistakenly presume that the NHI is a way of de-identifying patient data. It is in fact the complete opposite.

Impact The Manage My Health product will continue to use the NHI as the primary identifier for providers accessing the system to identify individuals. Determination of a patient’s NHI may be through referral information, or through an appropriate system designed to search the NHI database.

In the ED and AH settings, access to the patient SCR will be through NHI lookup only in the first and second stages of the project. Clinicians will need to know a patient’s NHI before they can search for that patient record. This

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is not a security measure as much as a layer of obfuscation. Obtaining an NHI for a given patient is a relatively simple process. It does, however, require the deliberate act of obtaining the NHI first, before accessing the shared primary care record.

In the third stage, the primary care record will be concatenated with the secondary care system. General practice medical records will show alongside the secondary record, without the need to look-up the patient NHI. Access to the secondary system is audited, however. The third stage of this project is out of the scope of this particular document, and should be considered in a separate privacy impact assessment document for the implication of that phase of the project.

MedTech’s statement that email addresses will be used as a unique identifier within ManageMyHealth is a statement that creates uncertainty around this rule. The general intent of rule 12 is to prevent individuals from being assigned a unique identifier that can be cross-matched between various sectors and agencies. An email address can only resolve to one email account. If that email account is a personal account, it is analogous to a person. Email accounts can, however, be shared between people (perhaps in a family group) and in this case, the account is not analogous to a person but a group of people. It would be unlikely (or unwise) that an individual wishing to access ManageMyHealth would use an email address that resolves to an email account that is shared by other people.

MedTech may be best to clarify its language around the intent of their use of email addresses. Clearly they are being used as a username for the purposes of authentication and communication, but whether they are the unique identifier within the ManageMyHealth system may not be the case (a simple test is to determine if a patient can have data in ManageMyHealth without having an email address – if so, the email address cannot be the unique identifier in the system).

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3.2. Specific Considerations 3.2.1 Minors and Privacy

Whether or not minors should have a SCR is a complex issue. This impact assessment does not present any one solution, and needs to defer any final decisions to the Project Governance Group.

There are currently no clear directives on how minors should be dealt with by health practitioners when it comes to informed consent for treatment and, consequently, consent to disclose their personal health information. There are both legal and ethical considerations for practitioners in this situation and, in general, decisions are encouraged to be made on a case-by-case basis.

The Guardianship Act 1968 allows people over 16 years of age to consent to health care treatment. People under 16 can consent to their own medical treatment for abortion or contraceptive advice and treatment under the Guardianship Act 1968 and Contraception, Sterilisation and Abortion Act 1977 respectively.

“The presumption that parental consent is necessary in order to give health care to children and young people under 16 is inconsistent with common law developments and the Code of Health and Disability Services Consumer’s Rights 1996, a regulation under the Health and Disability Commissioners Act 1994”[13].

In an address by Kerkin in 1998 to the Consent in Child Health Workshop, Kerkin states “Parents do not have an automatic right to information about their children” and “If you would be prepared to listen to the views of a mature minor in respect to treatment, you should do the same with respect to his or her personal information […]”[14].

In the current environment, if a patient disclosed to the health professionals that they did not wish for their health information for the visit to be shared with their parents, the health professional would likely first determine whether this was a genuine request that they would honour. It is likely that the health professional would talk this through with the patient and understand their concerns. If at the end of this process they agreed to withhold this information from the patient’s parents, they would likely make a note or alert within their patient management system stating that this information isn’t to be shared with anyone other than the patient.

Although practices have protocols in place to protect patient privacy, it is likely that a parent would, by ringing a practice, be able to determine if their child had a recent or up- and-coming appointment – regardless of the patient’s desire to keep this confidential. This occurs usually because reception staff who would normally deal with appointment enquiries have no access to clinical portions of a patient record (for patient confidentiality reasons). In order for this to be disclosed however, the parent would already have to suspect that his or her child was attending an appointment at the practice.

If the parent wanted further details on the child’s reason for the appointment or treatment, they would be required to speak to either a practice nurse or doctor. Both the nurse and doctor would likely be able to see the note to keep the patient information confidential from the patient’s parents. They could at this time make another

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determination as to whether to disclose any further information or not (although it is likely that they would remain loyal to their initial decision to keep the contents of the consultation confidential).

In this situation, the health professional is the gate-keeper of the release of the information to any other party.

The child may take additional steps to ensure their privacy. They could visit a practice that is not their usual general practice, or visit a specific youth or school-based clinic. In these situations, the disclosure of information to the parent would likely follow the same course as for the normal practice outlined above. It would be more difficult however for the parent to know which practice to contact to speak to the relevant health professional.

Implementing the SCR using MMH will change the dynamics of this arrangement. Parents will likely know that their child is opted on the patient-centric system. The key difference is how the parent would get access to the child’s patient record. If the parent has access to the child’s record then they could see all this information. In this situation, the provider has the ability to mark items as confidential, which do not then get loaded into the MMH system. As long as the provider marks anything entered as confidential for that appointment, the parent should not be able to see any of it, even if they have access to the child’s SCR through MMH.

Children could withhold their login credentials from their parents, or choose not to have a login. This could create tensions between the child and parent or the parent could exert their power over a child to divulge their MMH login.

The proposed recruitment method for gaining an SCR is an opt-out process. This could be modified slightly for minors, so that they must specifically opt-in to the system. This may mean minors that are concerned for their privacy could choose not to have an SCR. This does not however solve the same problem of parental influence or pressure, where a parent or guardian may opt the child in to having an SCR, with the child having little or no say in the matter.

An alternative method would be to restrict the opt-in to those between 11 and 16 years of age. It is reasonable to assume that most children under the age of 10 wouldn’t have any desire to withhold their health information from their parents. This method has problems once children age from 10 into their teenage years, where they may wish to keep certain aspects of their health care from their parents. Such children could choose to opt-out of having an SCR at this stage, but again could succumb to parental influence to have one.

It would be possible to allow those under 16 to have an SCR, and gain all the benefits associated with this, while restricting access to their SCR through MMH. In this situation, patients under 16 would not be given a MMH login to access their own record. They would still retain their rights under the HIPC to access information held on them, but they would be required to do this through their general practice. This would enable the health professionals responsible for the patient care to maintain the gate-keeper role. In such a situation, there would still be the potential for the parents to have information disclosed to them by the general practitioner, or by other health professionals accessing the SCR. Such a situation is not very different from the one we currently have however.

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Considerations in this section tie in closely with those in sections 3.2.2, 3.2.3, 3.2.4 and 3.2.7.

3.2.2 Opt Off Mechanisms

Patient records will be uploaded to the MMH system if they are enrolled in a participating PHO and they have not previously indicated that they wish to opt-out of having a SCR. This methodology is referred to as an “opt-out” approach.

The opt-out approach has been chosen to ensure that there is maximum coverage of SCR amongst the population from the outset of the project. Experience in other similar health systems has shown that patients choosing to specifically opt-out of such a system are extremely low. In Scotland in 2006, an emergency care summary contained records for nearly 3,300,000 patients with only 22 choosing to opt-out of the system after a public awareness campaign [15]. By 2010 the total number of patient records it held had risen to 5.4 million with 1,600 patients indicating that they wished to opt out [16].

Many people will not consider the importance of making their health information available to emergency departments, afterhour’s services or paramedics until they present to one of these services. By the time they present, in an opt-in system the opportunity would have been missed.

Giving patients the opportunity to opt-out of the project allows them to control how their health information is used. It does so in a way in which they must make a deliberate decision to do so, and so that they can be made aware of the consequences of not being involved in the project.

Having an opt-out methodology for such a project does increase the importance of a good public education campaign, with good patient information and a clear and easy mechanism by which patients may opt-out of the system. Obtaining widespread public awareness is not easy however. In Scotland, a direct flyer drop was undertaken to all homes as part of their Electronic Care Summary (ECS) project. Johnstone and McCartney[9] assessed people’s awareness of the ECS and found that only 42 percent of patients were aware of it, and only 16 percent recognised the leaflet. In the same study, 97% of respondents, after reading the leaflet were happy for their record to be included.

The main risks associated with using an opt-in system depend on how much interest there is in opting into the system initially. If the uptake is good, there may be an impact on general practices as patients overwhelm them to be added into the system. If the uptake is not good, the effectiveness of the SCR may be impacted on a long term basis, as health professional behaviour in the UK experience suggests one of the main reasons for not accessing the record on a routine basis is that most patients do not have a record.

3.2.3 Specialist and Sensitive Services

There are some services which operate in a similar manner to general practice but deal with particularly sensitive issues within the MidCentral, Wairarapa and Greater Wellington Regions. These services should be automatically excluded from providing information to the SCR as a matter of course.

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Only practices that use MedTech32 as their PMS and that hold a PHO patient register will provide information to the SCR. Specialist services are unlikely to do this in most circumstances.

The specialist Sexual Health service is run as a clinic outside the secondary care setting in Wellington, along with the Sexual Assault and Treatment Service. Youth and School Clinics operate within MidCentral, Wairarapa and Wellington. These clinics are set up to provide easy access for school-aged children to health care. They do not generally hold a patient register and, as such, would not contribute information to the patient’s SCR.

The project does not intend to enable the upload of any information from the following services:

 Cuba Street Clinic (Sexual Health Service);  School Clinics; and  SAATS Service

There may be consequences for patients where information is not being supplied to the SCR. For patients that present at a service that is not including information to the SCR and that present at an emergency department, afterhour’s service or paramedic service, and there is a medically relevant piece of information, they may be at risk of assuming a treating health professional has this information. It is recommended that information is displayed prominently within any service that is not supplying information to the SCR, but could reasonably thought to do so. This information should outline the consequences of this, and provide strategies for the patients to mitigate them when presenting.

3.2.4 Data Quality for Opted-Out Information

As well as a patient being able to indicate that they do not wish to have a SCR at all, patients may also have particular information excluded from the SCR.

Where a patient has opted-out of the project all-together, they would present to ED or an afterhours service and it would be clear to the reviewing health professional that the SCR was not available for that patient (they would not have any information displayed in MMH). The health professional would follow the usual process of completing a history (subjective) and physical (objective) examination. They may still choose to contact patients’ primary care providers to ascertain further medical detail or history for a particular patient, as they would normally do now.

Where a patient has asked for particular pieces of information to be withheld from their SCR, it may not be obvious to a treating health professional that the record is incomplete. The patient’s SCR would be displayed in MMH, but it would not be immediately obvious that there were parts of the medical record withheld, or what parts. There could be a risk that the health professional makes a decision believing they are reviewing all the information on a patient.

This risk is mitigated in two main ways. Firstly, the SCR is not intended to be a full patient medical record. It is intended as a summary snapshot of the patient’s main medical history as recorded by the General Practice. On these grounds, it is reasonable 32

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for anyone using the SCR to realise that it could contain significant omissions. Because of this, most health professionals using it must use it as an adjunct rather than a comprehensive record.

The second mitigation strategy is to undertake good health professional education. This should include how their practicing habits may or may not change. It should emphasise the importance of using the record as an adjunct rather than a completed record.

Recent evidence from the United Kingdom indicates that the risk of adverse incidents due to incorrect or missing information as part of a shared care record are very low[17]. Health professionals are experienced in interpreting information from multiple sources and adjust their weighting of information accordingly. This means that they are likely to account for some of the data quality issues that may arise from the use of a Shared Care Record.

3.2.5 Data Quality Issues in Patient Management System Usage

Computerised general practice management systems are prolific. MedTech 32 accounts for 95% of systems used within General Practice in the MidCentral, Wairarapa and Capital and Coast Districts. Houston VIP and Profile make up the remained or the systems used.

All of these systems have three main functions:

 patient administration;  clinical recording and storage; and  practice financials.

At a conceptual level, they all operate in a similar fashion. Although they store discrete pieces of data in a structured way, the overall structure of how that data is associated together into a record is less well defined. This is, in fact, a strength of the systems themselves, allowing each practice some degree of flexibility in how they use their system.

At a clinical level, this means that the systems are used differently by some health professionals. Each system contains standardise classifications system, the most commonly used at present being the Read Code. Read Codes are an international standard of medical classification, that assign codes to common terms. Practices use Read Codes, but also have a large proportion of information that is coded against their own personal codes (such as blood pressure measurements, height and weight measurements etc).

As well as the different ways of coding, there are also several ‘places’ within a medical record that particular pieces of information can be stored. A good and well understood example of this in general practice are the smoking status indicators. A person that is a smoker may have this information recorded within the ‘classifications’ section of their record, or it may be in the ‘history’ section of their record, or even in the ‘family history’ section of their record.

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To be used in a standard way between different care settings, non-standard coding must be mapped to common terms.

Some practices tend to classify every consultation. Some practices classify only major diagnoses. Some practices don’t classify in a consistent manner, relying on the clinical note or daily record to store and display all pertinent information. Such behavioural factors are tending to be addressed over time, inside programmes such as the PHO Performance Programme, which relies on health professionals within general practice to record and classify information in consistent ways for the purposes of monitoring and reporting.

Because the SCR is a summary record, some of the issues associated with where information is stored are mute, as the information tends to be aggregated from all relevant parts of a patient’s medical record within general practice.

Good health professional education is essential in ensuring that when they look at the SCR they are seeing a summary aggregate record. For each patient, the record could be coming from different sources, all of whom work in different ways. Health professionals need to be cautious using the SCR and use it as an adjunct to their usual practice, not to replace it. Evidence shows that behaviour to mitigate the risks caused by varying degrees of data quality in the records already exists amongst health professionals using shared care records[17].

Because MMH allows patients to access their own SCR, patients are able to review their information. If they find anything that is inaccurate or even confusing, they are able to discuss this with their General Practitioner and, where appropriate, have the information corrected.

3.2.6 Access by People of Patient’s Choosing

The project will allow registered health professionals in participating care settings to access patient records through the MMH provider portal. There may be situations where patients wish for others involved in their health care to be able to access their SCR. This may involve registered health professionals outside of the care settings or geographical area the project encompasses, or those involved in the patient’s health care that are not a registered health professional. This may also include those within the patient’s whānau, caregivers or advocates.

It is possible, however, for patients to share their own personal view of their SCR with any person that they may choose to. Patients are able to log into MMH with their own login and password, and sit with the appropriate people in the various care settings including the patient’s home and allow them to view the same information that would be available to a registered health professional through the provider portal. In this situation the carer, whānau member or advocate would not be able to access the patient’s record in the patient’s absence. This is likely to be a suitable compromise until a system or process can be established to deal with the complexity of wider access to SCRs. This also provides the ability for the project to service the Whānau Ora concept in providing a degree of self management and determination in respect to health records.

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3.2.7 Ensuring Authorised Access

Any particular patient’s SCR will be available to anyone with that patient’s login and password (in most instances, only the patient, or in rarer circumstance, the patient’s advocate or authorised family members).

The records will also be able to be located by a health professional with a login to MMH, by using the specific patient’s NHI.

Only health professionals working within one of the approved care settings and who are registered will be granted logins to the system. The Project Operational Teams responsible for audits may be required to have access for the purposes of auditing and facilitating the review by a health professional of the appropriateness of patient access. Any non-clinical staff with access to MMH as part of the Project Operational Team will be restricted to viewing only non-clinical information sufficient to enable them to undertake administrative components of tasks related to the project.

The health professional view within care settings, such as ED, will require a look-up by NHI and not surname. Although this is a practice of security through obscurity, it is intended to discourage those with logins from directly searching on patient names.

Identity verification is the key to ensuring authorised access. The Project Governance Group will be responsible for overseeing appropriate identity verification processes for patients and health professionals.

3.2.8 Human Rights: Stigmatisation

Many medical conditions carry stigma, including sexual health or sexual dysfunction- related conditions and mental health-related conditions. Making a patients’ summary medical information available to a wider range of health professionals has been seen traditionally as potentially increasing the chance they will be stigmatised.

ManageMyHealth allows patients to request that their information not be included in the SCR by marking pertinent portions of the clinical record as being “confidential”. This provides some level of control to the patient. Care will have to be taken in the initial stages where patients may wish to work with the health professional to determine which parts of their record they want to have included in the summary and which parts they don’t.

The associated risk with stigmatisation is off-set by the ability for health professionals outside the general practice settings to be empowered with more direct information about the patient. They will be able to deliver better care to the patient providing numerous benefits.

The risks associated with not disclosing significant conditions on the summary record will need to be raised by the patients’ GP at the time the request to not disclose that information is made. In the case of acute or short term conditions, such as sexual health issues, this may not be a significant concern. In the case of longer term conditions such

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as mental health conditions (especially where a patient is taking associated medications) this would have to be negotiated carefully.

The aspect of not having complete information about a patient within the SCR needs to be prominent in training for health professionals.

3.2.9 Community Pharmacists Use of SCR

In the past, the public has thought of community pharmacists primarily as being dispensers of medicines. However, they are a highly skilled health profession in their own right, with specialist skills not possessed by any other professional group. Pharmacists are often employed within PHOs to provide specialist pharmaceutical advise and to work within multidisciplinary teams undertaking medication reconciliations for complex patients.

Pharmacists interact with patients on a regular basis. Within their professional scope, they not only dispense medicine but also counsel patients. The BSMC business cases in the Wairarapa and MidCentral districts and the BSMC EOI in Capital and Coast district all discussed leveraging community pharmacy to bring about transformational change within the sector.

Pharmacists have traditionally worked in an absence of patient medical record information. Usually the only information they work with are the prescriptions they are presented with, and any information that the patient is able to volunteer – usually a lay description of the ailment that they are being treated for. The pharmacist is an important safety mechanism in the process of prescribing medications. In providing a segregation of duties between prescribing and dispensing they are an additional check that any obvious medication errors, particularly relating to transcription or dosage have an additional chance of being detected.

Giving community pharmacists access to a patient SCR is one way of improving the information that pharmacists are able to work with when checking prescriptions. Currently, this would initially be done with a check with the patient or basic information as to their condition or treatment and with a communication with the prescribing health professional, usually the patient’s general practitioner, if warranted.

Having an SCR changes the ability of the pharmacist to access information. The GP would no longer be the gatekeeper of this information. The nature of pharmacist’s interactions with patients is different from other health professionals. With other health professionals, patients usually present to a clinic for the purpose of being assessed and possibly treated by the health professionals there. In a community pharmacy setting, where retail as well as professional services are provided, this may not necessarily be the case. Patients may go to a pharmacy for retail services, and end up interacting with a pharmacist without even being aware of the distinction between pharmacy assistants and pharmacists.

It will be important for pharmacists to make a clear distinction between when a patient presents for retail versus professional services. Presentation of scripts for dispensing, and consulting pharmacists for health advice may be two situations where it is appropriate for a pharmacist to access the SCR. A pharmacist must have the patient NHI in order for

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them to access the patient’s SCR. This could be contained on a prescription form, or referral form. Otherwise, they would need the patient’s name and a facility to look it up within the NHI lookup system, which is separate to MMH and similar to how other care settings will operate.

General Practices are not the only prescribers of medicines. The SCR, within the scope of this project, will only include information from a patient’s funded general practice. Pharmacists will need to be well educated to ensure that they are aware that any prescribing list will only be part of the patient’s prescribing record.

3.2.10 Project Scope Change

Projects over time are subject to change and modification. This is usually done to improve outcomes or decrease expenditure. This privacy impact assessment is outlined for the project in its current configuration. Although the intent is to deliver the project outlined, it is conceivable that some operational details or objectives may change.

The Project Governance Group is the structure that will be used to have oversight of the project, with particular regard to privacy. This group will be responsible for endorsing any significant proposed change in the project, from initial planning to ongoing operation.

3.2.11 General Practice Opt-In

The primary care information infrastructure is complex in its nature. Generally, each general practice owns and maintains its own practice management system. This system not only contains patient records, but also runs the administrative and financial functions for the practice.

In order for a practice to contribute information to MMH to be used as a SCR, each practice must have activated the routines that upload data to MMH. While it is the intent of the PHO and DHB to meet the licensing cost for MMH specifically, the practice itself pays for the infrastructure and base licensing of their PMS. The PHO has little ability to mandate the activation of this service.

Through extensive health professional education, it is expected that the majority will understand the enormous benefit that a SCR will be able to provide to patients. It is expected that very few practices would initially opt to not offer this service for their patients.

For those practices that have clinical or other concerns, PHO Clinical Leadership will engage with those practices to ensure that they make informed clinical decisions to opt- out of the project.

Patients that wish to have a SCR but who are enrolled at a practice that may have chosen to opt-out of the project will not be able to have a SCR.

It is possible that any general practice may wish to discontinue their involvement in the project after the initial recruitment phase. In this situation, the data sourced from the practice would be available within the SCR in perpetuity unless it was explicitly removed.

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It will be important to contract with MedTech to ensure practices are able to remove themselves from this relationship and have the data that they have contributed removed from the SCR. In such a situation, it will be important for practices to ensure that they inform patients of their intent to withdraw from the project; as withdrawal will also have an impact on how the patient’s information is used (or not used, as the case may be).

3.2.12 Ownership and Intellectual Property

Patients exhibit rights of ownership over their health data. Health professionals also exhibit rights of ownership over health data they record. This arrangement is similar to the concept of joint ownership. Health Professionals have a right to store and access information that they have contributed to a patient’s health record. They also have a duty of care to ensure that information is stored securely and, in maintaining continuity of care to patients, is shared appropriately.

PMS vendors own the intellectual property for the systems that are used to store the information, including the database structure that is used to store the information. The data that is contained within these systems however is still owned by the patient.

There is a clear distinction between the data contained within a system, and the technical data structures that are used to store and serve that data.

MMH presents no significant change from this concept. The patient and health professional still own the health data that pertains to them, while MedTech Global retains the intellectual property of the MMH system.

3.2.13 Patients with Impaired Decision Making Capability

There are two aspects of consideration in the way in which patients with impaired decision making abilities are dealt with which are:

 the decision to opt-out of the project; and  consent for health professionals to view the SCR.

The decision to opt out of the project, meaning no SCR will be created, is a decision that will affect those that have an impaired decision making capability for an extended period of time. This may include those with degenerative conditions or severe head trauma, but is unlikely to include those that are temporarily unconscious.

Patients that have impaired decision making for extended periods may have a power of attorney in place, or their next of kin may have the ability to make decisions about their health care on their behalf. In these situations, the person who would normally be able to act for the patient in regard to informed consent should also be the person that is responsible for the decision whether to opt the patient out of the project or not.

For such people, they may register their wish to opt the patient out of the project in the same way as a patient would. The project operational team will check with the patient’s general practice to confirm the person has appropriate decision-making responsibilities for that patient.

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Patients often present in care settings such as the Emergency Department and Aged Care facilities where their decision-making ability is impaired to some degree (they may be unconscious or confused). In these situations, it may not be practical for treating health professionals to ask for the patient’s consent to view their SCR. Health professionals who are making a decision to treat a patient in such a situation should also have the capacity to access the patient’s SCR without the explicit consent of the patient.

3.2.14 Use of MedTech32 Confidentiality Flag

Currently, data items that may be uploaded to MMH can be marked with a “confidentiality” flag within MedTech. Traditionally this flag was not intended for use with MMH, and is generally used by General Practice to mark those items that are particularly sensitive so that they may only be shared with other specifically “trusted” health professionals within the practice.

It is being proposed that this flag be used to provide a level of granularity around what information about each patient is able to be viewed through the Shared Care Record. By marking individual items as “confidential” those particular items would not be included in the Shared Care Record, while the remainder of the patient record would. Although this suggestion will work for MMH, it must be done in conjunction with the General Practice configuring how the confidentiality flag is used within their practice, so as not to hinder its current functionality.

Having such a flag with a dual purpose is clearly not ideal, and provides room for confusion or error. It is recommended that MedTech be asked to resolve this by including a second flag for those data items to be included within MMH that can be used solely to prevent MMH upload of those particular data items. The philosophy of this project is to use the tools that currently exist to ensure that the project can be delivered in a timely fashion. As such, this requirement should not stop the project from proceeding. Sound training of general practitioners and practice nurses should be a priority for this project, so that they understand the privacy requirements around this.

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4. Recommendation Summaries

4.1. Opting Out

# Description Impact Reference

1 It must be easy for patients to indicate that they wish to opt-out of the There should be no barriers for patients to choose to not have their project. information included in a SCR within MMH.

2 Patients should be able to present to their General Practice and indicate Patients must be able to make an informed choice about what that they wish to opt-out of the project. happens to their health information. Some patients may not have access to a telephone to opt-out over the phone.

3 Patients should be able to make a cost-free phone call to indicate that they Not all patients will have the time, or wish to pay a consultation fee to wish to opt-out of the project. see their general practitioner or practice nurse. General Practice should not be burdened with additional administrative work unnecessarily as part of the project.

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4.2. Patient Education

# Description Impact Reference

1 Public awareness campaigns should be run within the geographical regions The way in which information moves around the health sector will for participating PHOs. change. Patients need to be aware of what is going to happen to their health information (Rule 3).

2 Patient information contains very clear and explicit instructions on the Patients will have the ability to access their own SCR. Because of importance of keeping their personal username and password for Manage this, they also have the ability to inadvertently provide access to their My Health secure. This also needs to outline appropriate circumstances in SCR if they disclose their username and password to a third party. To which they could give their login information to a parent, guardian or maintain the security and confidentiality of their information, they must caregiver. keep this username and password private (Rule 5).

4.3. Provider Education

# Description Impact Reference

1 Health professionals should be given clear messages in training that the The SCR is only a summary record. It is intended as an adjunct to SCR should only be used in conjunction with standard history taking good clinical practice. Omission of vital information from the SCR may methodologies, and should not be relied on by itself. occur for various reasons. Health Professionals must not rely on the information within SCR alone (Rule 8).

2 Training of health professionals need to include aspects of how a SCR may The SCR may contain information that may contribute to patient affect patient stigmatisation compared with traditional models. stigma, particularly around sensitive information such as Mental Health or Sexual Health-related matters.

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3 Health Professional education and training material emphasises the Health Professionals will have the ability to access patient SCRs. importance of keeping their username and password safe and secure, not Because of this, they also have the ability to inadvertently provide sharing logins and reporting immediately any time where their username or access to the SCR to others if they disclose their username and password may have been compromised. password to a third party. To maintain the security and confidentiality of their information, they must keep this username and password

private (Rule 5).

4 Health professionals should be educated where in the circumstance that The SCR is an aggregated record. It is sourced from other patient they base significant clinical decisions on information obtained through the records that may be changed over time. While the accuracy of the shared care record, especially where that decision is influenced contrary to SCR is paramount, it is mutable by its very nature. The SCR may also what they may otherwise have made in the absence of the information, that be incomplete. It is possible for clinical decisions to be based on they should document within their own notes the information that caused information within the SCR, but for that SCR record to not persist. them to make this decision. They must be aware that the aggregated record is mutable.

5 Health professionals wishing to access a patient’s SCR should routinely ask Gaining verbal consent to access the SCR gives patients who may patients for consent to view their shared record. Where patients are not able not otherwise be aware that their record is accessible in a care setting to give such consent (they may be unconscious or otherwise incapacitated), to determine whether they wish for it to be accessed. such consent should be bypassed.

4.4. Manage My Health Functionality

# Description Impact Reference

1 Health professionals accessing MMH should have a view that explicitly excludes clinical notes / daily record entries.

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2 MMH should allow a patient to attach a note disputing the accuracy of Any disputes over accuracy of information may be recorded in normal information if their request for update of information is declined by a general general practice within the clinical note. It is not intended that access practice. Providers should also have some ability to make seen within MMH to the clinical note will be made through MMH. Patients that wish to a note to the same effect if requested to do so by the patient. dispute the accuracy of information that the health professional does not wish to correct must have some way of flagging such information

is in dispute by them.

3 There should be a mechanism by which the Project Operational Team is able to confirm the presence of a patient’s SCR within the MMH.

4 The Manage My Health portal should remove or make inaccessible a Information should only be retained as long as it is needed. As MMH patient’s medical record once they are confirmed to have died. is not intended to be used for medico-legal purposes, a patient’s health information should be removed from their SCR upon their

death. A record would be retained in General Practice indefinitely (Rule 9).

5 The Manage My Health privacy statement should remove from its limits of Information provided to MMH for inclusion in the SCR if used for use clause, the intention to use the information within Manage My Health to anything other than direct clinical use could cause patients or provide population health statistics data at a national or regional level. This providers to withhold information. should be re-enforced with any contractual arrangement with MedTech Global.

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4.5. Processes and Practices

# Description Impact Reference

1 Organisations providing access to health professionals should be required The “surface area” for attack of the MMH product is greater than to have within their employment contracts appropriate sections that label information stored within existing General Practice. A breach in the actions that breach network security or patient privacy as serious security of one system could compromise a whole district’s patient’s misconduct. health information.

2 The clinical quality board or other appropriate clinical group should work to General Practitioners and patients may perceive it to be unnecessary establish guidelines for use of the SCR within community pharmacy for some care settings to view the whole SCR – specifically settings, before access is granted to MMH in these settings. community pharmacy settings.

3 The Project Governance Group should ratify an appropriate process to Health Professionals may need to prevent their patients accessing support providers’ requests to prevent patient access to their own SCR on their own medical records in accordance with the Privacy Act. The the grounds outlined in HIPC rule 6. patient having access to their own records means that the traditional “gate keeper” role played by the GP will no longer apply.

4 Appropriate identity verification processes need to be implemented, so that General Practice only has finite resource to accommodate request for patients wishing to opt-out, request information held within their medical patients to access their own SCR through MMH. The PHO will record, or request an access audit can be verified as truly being the patient. facilitate the allocation of patient access in the initial setup of the project. Patients, while known to General Practice, are not known to

the PHO on a personal level. The PHO must ensure the identity of a patient before allocating a username and password.

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5 Data contained within MMH should not be matched for any purpose, other The SCR provides easy central access to NHI based information on than with another health agency providing direct clinical care to a patient, patients. This makes the information valuable for matching. Matching for the purposes of providing a combined clinical record. the data within MMH for a purpose other than providing direct clinical care to individual patients could make patients and health

professionals not want to contribute information to the SCR.

6 Data matching for the purposes of providing a combined clinical record, for direct clinical care should only be matched on a patient’s NHI.

7 All processes and practices should be included within an operational There are a number of processes and procedures that need to be guidelines document. This document should become the living document developed, ratified by the Project Governance Group and for the project. Changes to this document should be endorsed by the implemented by the Project Operational Team. These processes will Project Governance Group. be varied and need to be implemented accurately to ensure the individuals maintain the privacy of their information.

8 Practices, PHOs and DHBs may choose to discontinue using MMH to Rule 9 : Retention provide access to SCRs. In this situation, a process must be set up that enables patients registered within the practice, PHO or DHB to have their information removed from MMH.

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4.6. Non-participating Care Settings

# Description Impact Reference

1 Specialist Services that deal with particularly sensitive issues or clinics that An aggregated record has the potential to aggregate information from appeal to patients due to their level of anonymity they provide will not be various care settings. Patients will often attend a care setting, actively involved in providing updates to the SCR. These services include particularly for specialist services such as Sexual Health, because the Sexual Assault And Treatment Service (SAATS), Specialist Sexual they wish to keep this part of their medical record separate from their Health services, School Clinics. main record. Aggregating information using MMH could hinder their ability to do this.

2 Health services that do not actively provide detail to the SCR display Patients will come to expect that their health information contained prominently information that makes clear information is not supplied to their within primary care is available to health professionals outside SCR – outlining any potential consequences. General Practice settings. If a primary care setting is not providing health information to SCR for any reason, the patient may not be

aware of this. This could create issues when they present to another care setting, and that information is not available (that they had expected to be).

3 Health services that do provide detail to the SCR prominently display Patients need to be aware of what happens to their health information that makes this clear. All services that do so should have patient information. Implementing MMH and a SCR changes the information education information in a prominent and accessible place. flows within the sector. Patients need to be informed what happens to their information so that they can make appropriate decisions about it.

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4 Organisations with staff accessing the MMH system will be required to The SCR will be a system where patient records can be accessed by ensure that the employment agreements that they have with their staff have health professionals within a number of organisations. It is important clauses that treat the breach of security to patient systems as serious security if maintained within each and every organisation. It is misconduct. possible that staff will not utilise MMH appropriately – putting the privacy of all those on the system at risk.

5 Organisations will also be asked to ensure that their network and processes The SCR will be a system where patient records can be accessed by and procedures meet a minimum security standard (based on HISO’s health professionals within a number of organisations. recommendations[12])

6 A Project Operational Team comprising a privacy officer from Compass Access to the SCR will be relatively open to health professionals Health and from each respective DHB will be established and maintained. within approved care settings. Some restricted rights will be applied in some care settings, such as community pharmacy. In general,

procedures and processes will ensure the ongoing appropriate use of the system by all. Processes need to be implemented by appropriate staff.

7 The Project Operational Team will facilitate regular audits of provider Access to the SCR will be relatively open to health professionals access to patient records on the system. Where an investigation needs to within approved care settings. Some restricted rights will be applied in be made, this will be done by appropriate health professionals. Any finding some care settings, such as community pharmacy. from an investigation that shows a breach of privacy will be reported this to the offender’s employer.

8 The Project Operational Team will, prior to the establishment of the aggregated shared record, set up and be responsible for a process to answer patient queries around access to their records, and when requested on behalf of the patient facilitate the investigation of the appropriateness of this access. Only health professionals will have access to clinical

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information as part of any such investigation. The process will require reporting back to the patient the outcome of any investigation.

9 An 0800 phone number and Freepost Address will be established that will Patients must be able to easily opt-out of the project, so that they do enable patients to (a) query why provider’s have been accessing their not have a SCR aggregated for them. patient record (b) determine whether for any given patient, at the patients request whether the Manage My Health system is aggregating any of their information.

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5. Project Governance

The following is the suggested composition of the governance structure for the SCR.

The Project Governance Group should have representation from patients and consumers, clinicians, privacy officers, information professionals and it should be the responsibility of those representatives to interface and present the issues of their respective constituents. Such governance structures for electronic health records project is supported internationally[18].

MidCentral BSMC Compass Primary Wairarapa BSMC Alliance Leadership Health Care Network Alliance Leadership Team Board Team

Reporting & Accountability

SCR Project Governance Group

Consumer Rep Wairarapa Primary Care Clinician Clinical Workforce Consumer Rep MidCentral or CCDHB Primary Care Clinician Wairarapa or MidCentral or CCDHB DHB CIO Wairarapa Secondary Care Clinician Compass Health / PHO CIO MidCentral or CCDHB Secondary Care Clinician PHO / Compass Health Privacy Officer DHB Privacy Officer

PHOs General Practice

Implementation of Policies & Procedures Representation Directives and Data Governance & Oversight

Patients and Advocates SCR Operational Team MedTech Global

Opt-Out Audit & Access Queries

Secondary Primary Care Care Information Information Resource Resource

The SCR Operational Team will be the operational resource that is used on a daily basis to implement the privacy procedures and policies overseen by the governance group.

The functions of the governance group would include: i) to maintain governance over the storage of data, its use and MMH functionality used in the project contractually with MedTech Global; ii) oversee and review policy and procedural documentation around all privacy impacting processes; iii) to appoint clinical auditors where necessary as part of a privacy review; iv) to review privacy audit outcomes, report breaches to employers and professional bodies; and v) to control the project scope and authorise any changes in care settings where the SCR may be accessed.

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The governance group should be directly accountable to the Alliance Leadership Teams, responsible for oversight of the BSMC initiatives through the MidCentral and Wairarapa districts. The group should be established in its own right, rather than as a sub-group of any other established committee or board as the project has such significance, profile and specific subject matter.

It will be expected that representatives of the group are well informed by their constituents within the wider health sector, and that they bring representative views for discussion.

The SCR operational team will be responsible for implementing and executing the policies and procedures decided upon by the project governance group. The SCR operational team will be made up of resources, most likely from the PHO. They will also be able to call on, from time to time and where appropriate technical resource from within primary or secondary care.

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6. SCR and MMH Terminology

The terminology used in this document tries to distinguish between a Shared Care Record and ManageMyHealth. The Shared Care Record is used to describe the generic concept of aggregated patient data, while ManageMyHealth describes the proprietary technology with which the patient data is accessed and presented

Figure 7 below shows on the left how MMH and the SCR are related in the current configuration. They are currently tightly coupled. The MMH data repository is the SCR data repository.

ManageMyHealth ManageMyHealth Orion Patient User Interface Portal

ManageMyHealth Google Health Standards Based Interoperability Layer Interoperability Layer

Shared ManageMyHealth Summary Shared Care Record Record (SSCR)

Standards Based Interoperability Layer Profile IBA PAS MedTech 32 MedTech 32

Figure 7: Current (left) and Future (right) relationships of SCR and MMH

The figure on the right goes on to show how MMH can be decoupled from the SCR, and how other health portal providers (in this case, Google, Microsoft and Orion are used as examples only) can be used to access the SCR, which would be a separate stand-alone data repository. In this case, MMH could still be used by health professionals or patients to access appropriate SCRs – it would not be the only option, however.

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7. Description of Agencies

Agency Description

Ministry of Health Government agency responsible for setting health policy.

Compass Health Shared Services Agency for Primary Health Organisations in Lower North Island

Capital PHO PHO Covering Central Wellington

Tumai mo te Iwi PHO Covering Porirua

Kapiti PHO PHO Covering the Kapiti Coast

Wairarapa PHO PHO Covering Wairarapa District

Manawatu PHO PHO Covering Manawatu Region

Horowhenua PHO PHO Covering Horowhenua Region

Tararua PHO PHO Covering Pahiatua, Dannevirke and surrounding regions

MidCentral District Health Board District Health Board responsible for the provision of health services in the MidCentral Region, covering Manawatu, Horowhenua, Tararua and Otaki regions

Capital and Coast District Health Board District Health Board responsible for the provision of health services in the Wellington district

Wairarapa District Health Board District Health Board responsible for the provision of health services in the Wairarapa District

MedTech Global A private software vendor, that products the MedTech 32 Practice Management System, and the Manage My Health information portal

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8. Glossary of Abbreviations

Abbreviation Description

BSMC Better, Sooner and More Convenient

HIPC Health Information Privacy Code

MMH Manage My Health

MSO Management Service Organisation

OPC Office of the Privacy Commissioner

PHO Primary Health Organisation

PMS Practice Management System

SCR Shared Care Record

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9. Health Information Privacy Code 1994 Rule Summary

The following list summarises the 12 rules that constitute the Health Information Privacy Code 19941. Each rule governs a particular aspect of health information privacy, which is listed above a basic explanation of the consequence of applying the rule. Both are taken directly from the commissioner’s publication.

Rule 1: Purpose of collection of health information Only collect information if you really need it.

Rule 2: Source of health information Get it straight from the people concerned.

Rule 3: Collection of health information from individual Tell them what you’re going to do with it.

Rule 4: Manner of collection of health information Be considerate when you’re getting it.

Rule 5: Storage of security of health information Take care of it once you’ve got it.

Rule 6: Access to personal health information People can see their health information if they want to.

Rule 7: Correction of health information They can correct it if it’s wrong.

Rule 8: Accuracy etc of health information to be checked before use Make sure health information is correct before you use it.

Rule 9: Retention of health information Get rid of it when you’re done with it.

Rule 10: Limits on use of health information Use it for the purpose you got it.

Rule 11: Limits on disclosure of health information Only disclose it if you have a good reason.

Rule 12: Unique identifiers Only assign unique identifiers where permitted.

1 Health Information Privacy Code 1994: Incorporating amendments and including revised commentary. Privacy Commissioner. December 2008. 54

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10. ManageMyHealth Privacy Statement™

This information was taken from the Manage My Health website, and has been indicated as being last updated on Wednesday, May 5, 2010.

Note that this section (from 10.1 onward) is reproduced from the MedTech website. It is Copyright © 2008 ManageMyHealth™. All Rights Reserved. Heading numbering has been added to conform to this document’s layout and reference structure. No other changes have been made to the text.

10.1. Introduction MedTech Limited is committed to protecting your privacy through its secure information technology service, ManageMyHealth™, and its strict adherence to privacy laws. MedTech Limited is also referred to as "MedTech", "we" and "us" in this statement and when referred to, such reference includes any person or organisation to which it has licensed or assigned its rights and obligations.

This Privacy Statement applies to the use of the ManageMyHealth™ site at www.managemyhealth.co.nz ("ManageMyHealth™") and the data collected by MedTech through ManageMyHealth™.

ManageMyHealth™ is a personal health service that lets you review, gather, edit, store, and deal with health information online. With ManageMyHealth™, you have the ability to access your own medical records if your medical practitioner makes these available through ManageMyHealth™. You can also share your health information with family, friends, and health care professionals, and have access to online health information management tools.

You can choose to share specific information (or all information); with other people (such as friends and family) and with applications (such as applications that add data to your health records, provide information to your healthcare provider, or use some of your health records to provide information to you about managing your health).

ManageMyHealth™ also provides information on well being generally and incorporates contributions from third parties.

This Privacy Statement is in two parts, Part A deals with Privacy generally and Part B specifically addresses the Health Information Privacy Rules prescribed in the New Zealand Health Information Privacy Code 1994 (as amended) published by the New Zealand Privacy Commissioner.

By using ManageMyHealth™ you agree to be bound by this Privacy Statement and the Terms of Use.

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10.2. Part A – General Privacy Statement 10.2.1 Collection of your personal information The first time you sign in to ManageMyHealth™, ManageMyHealth™ asks you to create an account. To create an account, you must provide personal information such as name, date of birth, e-mail address & physical address.

We may request other optional information, but we clearly indicate that such information is optional. You can review and update your account information. You can modify, add, or delete any optional account information by signing into your ManageMyHealth™ account and editing your account profile.

An account allows you to manage one or more health records, such as the ones you create for yourself and your family members. You can choose what information to put in your records.

To access your medical records held by your participating Healthcare Provider an activation code must be obtained in person from the Healthcare Provider. One specific e-mail address must be provided along with a valid photo-id.

You can close your account at any time by signing into your ManageMyHealth™ account and editing your account profile. We wait 90 days before permanently deleting your account information and all records.

10.2.2 Storage of information Any information or records you maintain with a ManageMyHealth™ account will be hosted on servers in a secure environment by a commercially reputable hosting vendor using best practice security techniques.

If you choose to access your medical records held by your medical practitioner through ManageMyHealth™ you are consenting to ManageMyHealth™ storing that information on your behalf and obtaining periodic updates to the records via your Healthcare Provider.

10.2.3 Security When any information is uploaded to your ManageMyHealth™ account, it sends it over the Internet using Secure Sockets Layer (SSL). This method encrypts the information to help prevent others from reading it while it's in transit from your computer to ManageMyHealth™.

The health information held is encrypted within the ManageMyHealth™ database. Further information about the security measures used is contained under the heading Rule 5 – Storage and Security of Health Information in Part B of this statement.

If you're using ManageMyHealth™ to upload sensitive data, you should properly secure your computer. To help do this, you can use anti-spyware and virus protection software. You can also restrict access to your computer (for example, by using a strong password for your computer login and a network firewall).

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MedTech has incorporated all reasonable measures to protect your information, however, we are reliant upon you to do the same.

MedTech cannot be held liable in any way for events beyond our control or in any way for accidental or unauthorised access of your information.

Accidental access could be obtained by leaving yourself logged on and leaving your computer unattended, ‘over-the-shoulder’ access or from unsecure print-outs of your information.

Unauthorised access could involve someone who is known to you guessing your password or a stranger/hacker circumventing our security measures. Social engineering is the easiest way to achieve unauthorised access to your information. To prevent this never give your access details to anyone, this includes your password.

10.2.4 Sharing your personal health information A feature of ManageMyHealth™ is the ability to share your health information with people and services that can help you manage your health or meet your health-related goals.

You can share information in a ManageMyHealth™ account with another person or business through ManageMyHealth™.

10.2.5 How we may use your personal information MedTech collects and uses your information to operate and improve and deliver ManageMyHealth™ or carry out the transactions you have requested. These uses may include providing you with more effective customer service; making ManageMyHealth™ or its services easier to use by eliminating the need for you to repeatedly enter the same information; performing research and analysis aimed at improving our products, services and technologies; and displaying content and advertising that are customised to your interests and preferences.

MedTech may occasionally hire other companies to provide services on our behalf, such as web site hosting; packaging, mailing; answering customer questions about products and services; and sending information about our products, special offers, and other new services. If we provide personal information to such companies, we only provide the personal information they need to deliver ManageMyHealth™ product and services. They are required to maintain the confidentiality of the information and are prohibited from using that information for any other purpose.

MedTech may disclose personal information if required to do so by law or in good faith believe that such action is necessary to: comply with the law, comply with legal proceedings served on MedTech or ManageMyHealth™; protect and defend the rights or property of MedTech and our family of web sites; or, act in urgent circumstances to protect the personal safety of users of MedTech products or members of the public.

10.2.6 How we use aggregate information and statistics MedTech may use aggregated information from ManageMyHealth™ to improve the quality of ManageMyHealth™ and for marketing of ManageMyHealth™. This aggregated

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information is not associated with any individual account. MedTech does not use your individual account and record information from ManageMyHealth™ for marketing without MedTech first asking for and receiving your opt-in consent.

10.2.7 Record access and controls When you create a record, you become the person responsible for that record. You decide what level and degree of access to grant other users of your ManageMyHealth™ records. You can view and update records you are responsible for and can examine the history of access to those records.

10.2.8 Sharing records with applications through ManageMyHealth™

We may provide you with information about applications that connect with ManageMyHealth™. You can view the applications and should examine their privacy statements and terms of use prior to using them or allowing them access to any of your health information. In order to access ManageMyHealth™, the application provider must commit to protecting the privacy of your health data.

No application has access to your information through ManageMyHealth™ unless and until you opt in through ManageMyHealth™ to grant it access. You control what health information you allow an application to access and the length of time they can access the information.

10.2.9 E-mail controls

To keep you informed of the latest improvements, ManageMyHealth™ will send you a newsletter. By creating an account you have given us your implied consent to send you such newsletters. If you do not want to receive the newsletter, you can unsubscribe at any time.

10.2.10 Use of cookies We only use temporary cookies on ManageMyHealth™ which are deleted upon you signing out. The cookies contain no personal information.

10.2.11 Changes to this privacy statement We may occasionally update this privacy statement. When we do, we will also revise the "last updated" date at the top of the privacy statement. We encourage you to review this privacy statement periodically to stay informed about how we are helping to protect the personal information we collect. Your continued use of ManageMyHealth™ constitutes your agreement to this privacy statement and any updates.

10.2.12 Enforcement of this privacy statement

MedTech must comply with privacy legislation when dealing with personal information. If you would like any further information or have any queries, problems or complaints relating to our Privacy Policy or our information handling practices in general, please contact us at:

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Privacy Officer ManageMyHealth™

PO Box 3329, Shortland Street, Auckland 1140 or

Email: [email protected]

10.3. Part B – Compliance with the Rules contained in the Health Information Privacy Code The New Zealand Health Information Privacy Code 1994 as amended modifies the privacy rules contained in the Privacy Act 1993 as they relate to health information. Each of these rules is addressed below.

10.3.1 Rule 1: Purpose of Collection of Health Information Information is collected and maintained for individuals for the purpose of improving or maintaining their health and well being. Use of the information for other purposes is not authorised. Express consent must be given by the individual if the information is used for any other purpose.

MedTech does not use your individual account and record information from ManageMyHealth™ for marketing without MedTech first asking for and receiving your opt-in consent.

Any information submitted to ManageMyHealth™ Community Forums or Blogs becomes public information and is not covered by this privacy statement. Accordingly you should be cautious as to what personal information you supply in these areas.

10.3.2 Rule 2: Source of Health Information The source of the information will come directly or indirectly from you.

This includes the information you authorise to be supplied by your doctor or other health professional.

MedTech has no control over the content of the information which is provided to you by your Healthcare Provider or other authorised third parties.

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10.3.3 Rule 3: Collection of Health Information from Individual Information submitted to ManageMyHealth™ for collection must be specifically authorised by the individual.

Subsequent access to the information by third persons (such as health care professionals and family members) will only be accessible by those persons the individual specifically authorises to have such access.

10.3.4 Rule 4: Manner of Collection of Health Information The collection of information will always be undertaken in a manner that is lawful and with the specific authorisation of the individual.

Information entered by an individual (or on behalf of an individual eg. minor in their care) is entirely at their discretion.

If Information is provided on behalf of an individual, it is assumed the provider has the legal right to do so.

10.3.5 Rule 5: Storage and Security of Health Information Storage of information is hosted in a secure environment by a commercially reputable hosting vendor using best practice security techniques.

The information is encrypted within the ManageMyHealth™ database.

Information delivered to ManageMyHealth™ from your Healthcare Provider is encrypted during transmission. Your information provided to you via a web browser is encrypted during transmission using the highest standard available today using VeriSign Digital Certificates. This provides at least 128 bit encryption or 256 bit encryption if you are using the latest version of the web browser.

ManageMyHealth™ is protected by a reputable network Firewall.

Daily Backups are performed to allow system restores to be performed in a disaster recovery situation.

Access to your account will be blocked following 5 failed attempts to logon. Your account is unblocked by using the forgotten password function on the website.

Information provided to you from your Healthcare Provider cannot be modified within the system.

MedTech follows strict internal procedures in collecting, storing and disclosing information about you.

10.3.6 Rule 6: Access to Personal Health Information We will act reasonably to ensure you will have access to your information at anytime.

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The exceptions to this include:

 You have been denied access to ManageMyHealth™;  ManageMyHealth™ requires a planned outage;  ManageMyHealth™ experiences an unplanned outage. Such events are considered beyond our control but all reasonable efforts will be used to re-establish the service as soon as possible.

We offer no guarantees that access to your information is available at all times.

Initially access to your information will be limited to you and the registering Healthcare Provider eg. your doctor, including other clinicians within your Healthcare Provider Practice. This will be expanded in later versions to allow other healthcare professionals you authorise and an optional "trust list" functionality which will allow you to grant access to other individuals involved with your care, such as your family members.

10.3.7 Rule 7: Correction of Health Information Information entered by you can be modified at anytime.

If you do modify your information you must consider what impact that may have on a person authorised by you who may have previously read the information and potentially acted on it. If this impact is significant you should inform the individual of the change.

All other information about you provided by authorised third parties cannot be modified by ManageMyHealth™. If you feel information requires correction you must contact the information source and request a correction. ManageMyHealth™ has no control of or responsibility for this process or the outcome.

10.3.8 Rule 8: Accuracy etc of Health Information to be Checked before Use All reasonable steps are taken by ManageMyHealth™ to ensure the information submitted is accurately stored.

Human error (either by ManageMyHealth™ staff and agents, by you or any third party submitting information) cannot be easily identified by ManageMyHealth™. Therefore, before using any information all users must take such steps as are reasonable in the circumstances to determine its accuracy.

Users must not act if the information appears incorrect.

If any user acts without taking reasonable steps to determine its accuracy that user is responsible for their actions and not necessarily the person who provided the information.

It is important you maintain the accuracy of your contact information so that you can be contacted at any time.

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10.3.9 Rule 9: Retention of Health Information MedTech will not delete your information unless your access is terminated.

If your account is blocked because you have abused your access privileges you will be offered the opportunity to obtain a copy of any legitimate health information you have entered. In these circumstances information provided by your Healthcare Provider will not be provided and must be obtained from your Healthcare Provider.

10.3.10 Rule 10: Limits on Use of Health Information Access to your information by you and others is limited to the purpose of your healthcare or well being. Use outside of this purpose is not permitted without authorisation.

Our terms and conditions authorise use of aggregated information which has identifying information removed. This aggregated information may be used to improve the quality of the services offered on ManageMyHealth™, for marketing of ManageMyHealth™ and for general ManageMyHealth™ usage analysis or population health statistics.

Health statistics will be gathered to allow planning of effective healthcare services within your region. This information is extremely valuable as it allows the limited healthcare services to be targeted to the needs of the population, which in turn potentially provides benefits to you and your family.

MedTech does not use your individual account and record information from ManageMyHealth™ for marketing without MedTech first asking for and receiving your opt-in consent.

10.3.11 Rule 11: Limits on Disclosure of Health Information Initially access to your information will be limited to you and your registering doctor, including other doctors within your doctor’s practice. This will be expanded in later versions to other health professionals you authorise and an optional "trust list" functionality which will allow you to grant access to other individuals involved with your care.

MedTech may occasionally hire other companies to provide services on our behalf, such as web site hosting; packaging, mailing; answering customer questions about products and services; and sending information about our products, special offers, and other new services. If we provide personal information to such companies, we only provide the personal information they need to deliver ManageMyHealth™. They are required to maintain the confidentiality of the information and are prohibited from using that information for any other purpose.

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We will not otherwise disclose such of your information that allows you to be identified to anyone without your consent.

10.3.12 Rule 12: Unique Identifiers The primary unique identifier used within ManageMyHealth™ is an email address of your choice, which you have authorised us to use to communicate with you. This identifier may be linked to your National Health Index number, if known, which is allocated to you when you use a service provided by a New Zealand District Health Board such as a public hospital. No other unique identifier is linked to you by ManageMyHealth™.

While an email address is globally unique we cannot guarantee that it will always be assigned to the same person. If an email address is no longer used by an individual it is then typically ‘made available’ to anyone else who wants to use it, much the same as a phone number. In the case of children we allow the use of a parents email address. Once an individual becomes 16 years old they become responsible for maintaining their account access by other persons such as their parents.

We are aware that over time you may change your email account hence you are allocated a unique system identifier which is inaccessible except by the system.

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11. Acknowledgements

The author would like to thank the following people for their feedback, advice, ideas and support in the preparation of this document:

Dr Bernard Cammack Dr Warwick Davenport Dr Adrian Gilliland Nicky Hart Jean Hera Dr Inga Hunter Shirley Hull Gary Ireland Chris Kerr Anna Kyle Ryan Lawrence Materoa Ma Melissa Marshall Dr Paul McCormack Dr Lynn McBain Dr Richard Medlicott Sebastian Morgan-Lynch Cathy O’Malley Margaret Robins Dr Helen Rodenburg Melissa Simpson Marilyn Tucker Stuart Wakefield Karen Whiterod

The author would also like to acknowledge Kensington Swan for undertaking a peer review of this paper.

11.1. Correspondence

For correspondence about this document please contact:

Jayden MacRae General Manager Information Management Compass Health

Email: [email protected] Phone: +64 21 911 943

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12. References

1 Ministerial Review Group: Meeting the Challenge: Enhancing Sustainability and the Patient and Consumer Experience within the Current Legislative Framework for Health and Disability Services in New Zealand. Ministerial Review Group; 2009. 2 Health Information Strategy Steering Committee: Health Information Strategy for New Zealand. Ministry of Health; 2005. 3 National IT Health Board: National Health IT Plan : Draft For Discussion. National IT Health Board; 2010. 4 Simpl: Health Management System Collaborative: Report for DHB Boards for April 2009. Simpl; 2009. 5 Wave Advisory Board to the Directory General of Health: From Strategy to Reality: The WAVE Project. Ministry of Health; 2001. 6 Office of the Privacy Commissioner: Privacy Impact Assessemnt Handbook. Office of the Privacy Commissioner; 2007. 7 Manawatu PHO, Horowhenua PHO, Otaki PHO, Tararua PHO, MidCentral DHB, Compass Health: Transforming Primary Health Care Services: MidCentral Business Case. ; 2010. 8 Wairarapa Community PHO, Wairarapa DHB, Compass Health: Tihei Wairarapa: Business Case for Primary Health Care in the Wairarapa. ; 2010. 9 Johnstone C, McCartney G: A Patient Survey Assessing the Awareness and Acceptability of the Emergency Care Summary and its Consent. Perspectives in Health Information Management 2010, Spring:1-10. 10 Morris L, Cameron J, Brown C, Wyatt J: Sharing Summary Care Records: Results from Scottish Emergency Care Summary. BMJ 2010, 341:C4305. 11 Privacy Commissioner: Health Information Code 1994. Privacy Commissioner; 2008. 12 Health Information Standards: Health Information Security Framework Essentials and Recommendations : HISO 10029.1. Ministry of Health; 2009. 13 Ministry of Health: Consent In Child and Youth Health: Information for Practitioners. 1998, :. 14 [http://www.privacy.org.nz/disclosing-children-s-health-information-a-legal- and-ethical-framework/] 15 Watson N: Patients should have to opt out of national electronic care records : For.. BMJ 2006, 333 (7557):39-40. 16 Emergency Care Summary [http://www.slideshare.net/sanidadyconsumo/emergency-care-summary] 17 Greenhalgh T, Stramer K, Bratan T, Byrne E, Russell J, Potts H: Adoption and non-adoption of a shared electronic summary record in England: a mixed-method case study.. BMJ 2010, 340:c3111. 18 Reti S, Feldman H, Safran C: Governance for Personal Health Records. Journal of the American Medical Informatics Association 2009, 16:14-17.

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APPENDIX 3: DIABETES SERVICES AND PERFORMANCE

1 DIABETES CARE IMPROVEMENT PLAN

In all three DHBs the DCIP now includes the following key elements:

∑ DCIP oversight; ∑ Practice plans; ∑ Specialist support for primary care; ∑ Workforce development; ∑ Specialist services; and ∑ Self-management support.

2 DCIP OVERSIGHT

Wairarapa DHB established a group to review their DCIP in 2014/15. Three key work streams were identified: Workforce, Self management, Specialist service. It reported to the Alliance Leadership Team in April 2015 and developed a proposal to increase the Diabetes Nurse Specialist team. This was not able to be progressed due to lack of an identified budget. During the current year this group has been re-forming into a long term conditions Service Alliance Leadership Team. It has recently been agreed that Wairarapa clinicians will join the CCDHB Diabetes Clinical Network and that oversight of the Wairarapa DCIP will be included in the terms of reference. This will occur from the 26 April meeting. A review of services against the Ministry of Health standards has been completed and the network will determine if further work on this needs to occur.

Hutt Valley DHB established a group to review their DCIP in 2014/15. In June 2015 it reported to Hutt INC and identified the following priorities:

∑ Annual practice plans, including Diabetes Annual Reviews ∑ Self management support and education ∑ Retinal screening and monitoring ∑ Workforce development and support ∑ IT support, e.g. shared care record, e-referrals, e-advice

During 2016/17 Te Awakairangi Health Network has been developing a long term condition management model in collaboration with practices. The DCIP is transitioning from a fee for service model to a new bulk funding model based on practice plans for long term conditions. To oversee the new DCIP it has been agreed to establish a Diabetes Clinical Governance Group which will meet in June 2016. A review of their services against the Ministry of Health standards has been completed by Te Awakairangi Health Network and the specialist diabetes team. The new Governance Group will determine if further work on this needs to occur.

CCDHB has a well established Diabetes Clinical Network, which provides clinical oversight for diabetes performance, provides advice and leadership and drives identified areas of quality improvement work within diabetes. It reports to the CCDHB Long Term Conditions Service Level Alliance. The focus for the group this year has been developing clinical indicators of good diabetes management and establishing practice level reporting. This work will enable service improvement support to be directed to where the need is greatest. This group has also selected four of the Ministry of Health 20 quality standards for diabetes for review against current practice. The standards selected were those related to self- management, podiatry, psychosocial support and hypoglycaemia. Advice from this has fed into diabetes health pathways work, improved reporting of emergency department attendances for hypoglycaemia and self-management support services.

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PUBLIC EXCLUDED 3 PRACTICE PLANS

In Wairarapa DHB all practices have practice plans along the same lines as above. A new plan template is currently being developed for the 2016/17 year. The plans will include a range of performance indicators, including several covering diabetes.

In Hutt Valley DHB Te Awakairangi Health Network is developing a long term conditions service model that includes diabetes plans as a key component. As at April 2016 four practices have plans in place. Agreement has been reached to transition the remaining practices by 30 September 2017. During the transition the practices without plans will continue to provide free annual reviews targeted to Maori, Pacific and quintile 4 & 5 on the NZ Deprivation Index, as well as free education sessions for patients assessed as needing them.

In Capital and Coast DHB all practices now have practice plans in place that have been approved by a PHO clinical governance group. Practices are bulk funded by the PHOs and the practice plans detail what services the funding will be applied to. The types of services provided with this funding include:

∑ Free annual reviews to those that are not on the long term condition programme ∑ Training on insulin starts for GPs and nurses ∑ Extended consultation time or subsidised visits for patients who need frequent or additional input to manage their condition (e.g. newly diagnosed, starting insulin, poorly controlled, those with complications) ∑ Multidisciplinary case reviews

4 SPECIALIST SUPPORT FOR PRIMARY CARE

In Wairarapa DHB there is no formal arrangement for the specialist clinicians to support primary care practitioners. However there is informal support provided by the diabetes nurse specialists when availability permits. This is an area that has been identified as a gap that needs addressing.

In Hutt Valley DHB there is a well established model for providing specialist diabetes advice to primary care. All practices are assigned to a diabetes nurse specialist as their key contact. The specialist physicians and diabetes nurse specialists hold clinic in selected practices as well as providing telephone advice. This model of care is being reviewed with the aim of optimising it so that the benefits of this support are maximised.

In Capital and Coast DHB there are two formal arrangements whereby clinical specialists support primary care practitioners with their diabetes care. The Diabetes Nurse Practice Partnership is a collaboration of Diabetes Nurse Specialists employed by PHOs or the DHB specialist service. Each nurse is assigned to a group of general practices with an initial focus on 15 priority practices. This team regularly visits the practices and provides clinical advice and support for practices to implement their population plans. Each of the practices they work with has one or more diabetes nurse champions and the DNS works to upskill the practices so that they can provide more care in primary care. The Diabetes Case Collaboration service allows the diabetes specialist physicians to support the priority practices through providing advice and support on site. A variety of approaches are in place including combined clinics and case discussions.

5 WORKFORCE DEVELOPMENT

In Wairarapa DHB there is no programme other than what can be provided by the clinical nurse specialists (see section 1.3).

In Hutt Valley DHB there is a formal programme of primary care practitioner education that is developed by Te Awakairangi Health Network in collaboration with the DHB specialist service.

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In Capital and Coast DHB workforce development is provided through the Case Collaboration and Diabetes Nurse Practice Partnership.

6 SPECIALIST SERVICES

The Wairarapa specialist service also focuses on complex patients. The services provided by diabetes specialist nurses and general physicians have recently been augmented by a visiting endocrinologist.

Hutt Valley DHB provides a similar service to Capital and Coast DHB. They have also reported increased numbers of children and adolescents and insulin pumps.

In Capital and Coast DHB the specialist service is focusing on complex Type 2, Type 1, paediatric and adolescent, young adults, gestational and renal diabetes. It has been reported that diabetes in children and adolescents is on the increase. There has also been a significant increase in the number of patients on insulin pumps since PHARMAC started to manage this service and access criteria changed. This comprises a significant workload.

7 SELF-MANAGEMENT SUPPORT

In Wairarapa DHB Compass Health has trained two people as trainers on the Stanford Programme. Several programmes have been run to date with a focus on Maori and Pacific, and the first train the trainer training is coming up in June. During 2015/16 several self management programmes have been run with an average of 14 participants.

In Hutt Valley DHB, Te Awakairangi Health Network (TeAHN is continuing to develop and expand options for patient self-management services and programmes. This includes: ∑ The provision of a community, marae and/or General Practice based diabetes self-management education group programme called D.I.Y Diabetes for patients diagnosed with Type 2 Diabetes. This is a four week programme delivered by a multidisciplinary team that includes a dietitian, pharmacist, nurse and healthy family coach. It is based on the philosophy of the patient is the expert on their life and aims to provide individuals with tools that they can use for better self-management. The programme encourages patients to bring in their key family/whanau members for support for the duration of the programme. The programme is now in its second year and preliminary quantitative data (HbA1c) indicates that participants of the programme have significantly improved their control of diabetes. Qualitative feedback from the participants indicate this programme is well received and there are patient stories of individuals and their families making significant change in their lifestyle resulting in weight loss, increased physical activity and improved nutrition. . ∑ Linking and developing a network of ongoing support groups including online support and integration with existing groups such as the Green Prescription progamme and Hutt City Council’s Wellness Programme ∑ Practice based medication optimisation reviews led and delivered by a Pharmacist Prescriber. This service is targeted at patients who have poor control of their blood sugar levels and are at high risk of diabetes related complications. The aim of the service is to optimize medicines related health outcomes. In this service the pharmacist prescriber works collaboratively with the general practice team and the patient. The service aims to understand the patient’s beliefs and perceptions of their condition and the medicines they have been prescribed to manage their diabetes. There is early evidence that this service is resulting in an improved understanding about their medicines and therefore improving adherence – a key component in the management of diabetes. ∑ The TeAHN Health Promotion Team which comprises of healthy family coaches and dietitians. The Health promotion team undertakes population health level self-management initiatives aimed at preventing diabetes through promoting healthy lifestyles, including events, Good Food programme, Valley Fit programme, and Pacific programme. At an individual level the work of dietitians and healthy

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PUBLIC EXCLUDED family coaches with individual patients and their families works to address obesity, diabetes and pre- diabetes.

In Capital and Coast DHB the PHOs are taking a variety of approaches to the delivery of self- management programmes depending on their populations. The main focus at Karori Medical Centre is to have individual self-management sessions on a regular basis whereby patients are encouraged to understand and self-manage their disease. A particular focus is patients with an HbA1c over 64mmol and newly diagnosed patients. Compass Health continues to run their Diabetesr Your Life – Your Journey programmes. Compass Health has become a licensed provider for the Stanford Self Management programme (both the standard and diabetes programmes). Two of the Compass team are trained to run programmes, and have run five courses to date, as well as the first train the trainer course. In addition Compass Health offers fit coach and healthy lifestyle programmes within the population health team, and individuals sessions are offered in General Practice. Well Health and Ora Toa practices are offering a mix of individual and group sessions.

8 LONG TERM CONDITION INTEGRATION WORK

8.2 LTC Oversight

Each DHB has a Service Level Alliance Group / Network that is responsible for driving an integration programme for performance and to increase population outcomes for long term conditions, including diabetes.

8.3 Self-management support

Currently there is a 3 DHB wide piece of work underway to review the current utilisation of self- management funding and to review and develop a new model of care to get best impact for the population. As a framework for this work a 3 DHB Self-Management Support framework has been developed which provides a guide and common understanding of what self-management support is for health professionals.

8.4 Integration with prevention initiatives

8.4.1 More heart and diabetes checks

Since 2013 there has been a programme in place to support PHOs to achieve the health target of 90% of eligible people having a cardiovascular disease risk assessment in the previous five years. All PHOs have achieved or almost achieved the target – see section 5.3 for results.

8.4.2 Green Prescriptions

In 2013 the Government allocated $7.2 million over four years for increased Green Prescriptions (GRx) to enable providers to build up their capacity and capability to deliver more GRx services and to align the service to better address patients at risk of diabetes.

The additional GRx funding was provided at the existing level of $65 per adult referral. The target group for these additional GRx referrals is people at risk of, or who already have, diabetes. (Reference data in section 4.6)

The Green prescription contract will go out to procurement within the next 3 months, with the new provider (or existing) to being the new contract from 1 January 2017. The procurement will incorporate new programmes, including Pre School Active Families (available in the greater Wellington region to children identified through the B4SC as obese, with particular reference to Maori and Pacific), Maternal Green Prescription (below), Active families and the standard Green Prescription contract. The DHB will

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PUBLIC EXCLUDED negotiate new targets and reorientate the funding to align with the emerging priorities regarding children (e.g. increased focus on Active Families).

8.4.2.1 Maternal Green Prescriptions

The DHB is in the final stages of preparing a proposal to start implementing Maternal Green prescription (subject to confirmation of MoH funding). The Maternal Green Prescription programme will be available in the greater Wellington region to all pregnant women with an HbA1c from 41-49 (pre diabetic), as identified through the first antenatal bloods. Funding dependant, the programme will be fully implemented from 1 January 2017. Outcomes expected include, 144 referrals to the programme over the initial 12 months and at least 50% of the referrals will be for Maori and Pacific women.

8.4.3 Project Energize

Project Energize is an evidence-based approach to improving the nutrition and levels of physical activity originally developed in the Waikato. Project Energize is to be implemented in 9 Wellington schools throughout 2016 and will be expanded to 30 CCDHB schools by the end of 2019. The RFP for Project Energize was completed in January 2016 with the contract currently in the final stages of sign off with the new provider at the moment. An announcement regarding the new provider will be made in April.

8.4.4 Podiatry and retinal screening services

Reviews of these services across the sub-region were completed in 2015. The Ministry of Health published new guidelines for retinal screening in March 2016.

Work will commence in May 2016 to consider the review findings for both services and to understand the impact of the new retinal screening guidelines. The outcome from this work will be recommendations on any service changes required and an implementation plan.

9 KEY PERFORMANCE INDICATORS

9.1 Diabetes prevalence

Nationally diabetes prevalence is measured through the virtual diabetes register (VDR). The following table shows the number of people on the VDR by ethnicity as at 31 December 2015.

Wairarapa Hutt Valley CCDHB Ethnicity Number Prevalence Number Prevalence Number Prevalence Maori 360 5.0% 1,176 4.9% 1,338 4.0% Pacific 54 - 1,078 9.6% 2,111 9.9% Other 1,989 5.7% 5,985 5.5% 10,488 4.3% Total 2,403 5.6% 8,239 5.7% 13,937 4.7%

The Ministry of Health estimates that diabetes prevalence is increasing by 0.3% per annum.

9.2 Diabetes management

The following table shows the proportion of the enrolled population of enrolled people with diabetes 15-74 years with HbA1c ≤64mmol as at December 2015.

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Wairarapa Hutt Valley CCDHB Maori 61% 57% 58% Pacific - 57% 54% Other 72% 73% 69% Total 70% 67% 65%

A higher percentage is better as it indicates that more of the population has well-controlled diabetes. In Capital and Coast DHB the clinical network has set a target of 64%, which is being achieved for the total population. Across all three DHBs, a smaller proportion of Māori and Pacific have well-controlled diabetes compared to other ethnicities.

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9.3 More heart and diabetes checks

More Heart and Diabetes Checks National Health Target is 90% coverage, all PHOs are well on their way to meeting the target for the overall population. Maori and Pacific continue to have lower rates of checks than other ethnicities.

The following table shows the health target results for the quarter ended 31 December 2015.

DHB PHO Maori Pacific Other Total population WDHB Compass Health 84% 83% 92% 91% Wairarapa Hutt Te Awakairangi 85% 88% 91% 89% Valley Health Network DHB Ropata Health 87% 85% 91% 90% Centre (as Cosine PHO) Total 89% Capital & Compass Health 87% 87% 91% 91% Coast Ora Toa 84% 90% 91% 88% DHB Well Health 87% 90% 96% 92% Karori Medical 87% 85% 91% 90% Centre (as Cosine PHO) Total 91%

9.4 Specialist service utilization

The following graph shows a downward trend in the number of acute admissions for diabetes since 2013.

The following graphs show the number of first and follow up outpatient attendances for diabetes. The trends are consistent with the estimated national annual increases in diabetes prevalence.

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9.5 Workforce development

Number of practice nurses who have completed the NZSSD on-line learning module Jun- Sep- Dec- Mar- PHO 15 15 15 16 Compass Health 59 62 68 68 Well Health N/A 15 16 16 Ora Toa 9 9 9 Karori MC 5 5 5 5 Total CCDHB 73 90 98 Te Awakairangi Health 38 41 41 Network Compass Wairarapa N/A 4 4 5

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9.6 Self-management

Number attending a self management programme each quarter PHO Individual Group Dec- Jun- Jun-15 Sep-15 Mar-16 Sep-15 Dec-15 15 15 Mar-16 Compass Health# 0 0 15 6 2 10 Well Health 8 140 189 148 15 0 0 0 Ora Toa 162 162 3 0 0 Karori MC 138 83 81 0 3 0 0 Total CCDHB 8 440 434 229 33 9 2 10 TeAwakairangi Health 77 132 104 31 ? 11 Network* 14 Compass Wairarapa 0 0 2 ? 0 0 2 * Medication review consultations are the individual programmes. # Recording attendance at self management programmes (both individual and group sessions) within Compass Health Wellington general practices is variable, thus the table reflects attendance of patients with diabetes at Stanford programmes only. Numbers cannot be compared across the PHOs due to the variances with recording.

9.7 Green prescription

The following table shows the number of referrals to Sport Wellington for Green Prescriptions for people with diabetes or pre-diabetes over all three DHBs.

Type 2 Diabetes Gestational Pre-diabetes –where your blood (diagnosed) OR diabetes glucose (sugar) levels are higher than (diagnosed) OR normal but not high enough to be called type two diabetes.

Q1 137 39

Q2 137 35 2014-15 Q3 38 14

Q4 96 15 Q1 217 49 2015-16 Q2 399 67 Q3 232 2 49 Total 848 2 165

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Disability Responsiveness programme reporting framework - highlight report for September 2015 - October 2015

Project Status Recent Work Completed Current Activity Major activities planned next New Risks or Issues month Health 1.1 Primary Health Care & better integration CCDHB HVDHB WDHB 3 DHB across services keep disabled people healthier & address needs earlier

1.1.1 Improve system responsiveness by CCDHB: Health Passport Help Desk at Continue to survey Health Passport Continue distributing Disability WDHB: There is a delay activating developing a dash board of indicators to Kenepuru was reviewed and feedback users by phone. Preparation for Support Needs forms and receiving the disability alert in the WDHB measure outcomes and to target areas gathered from volunteers. HVDHB: launch of Health Passport online completed forms. Continue Health system which means disability for quality improvement Disability Champions meeting resulted in survey - inlcudes ethics approval. Passport user survey by phone. support needs for Wairarapa suggestions on how to get all staff using Tailored letters being designed for Launch online Health Passport user patients can not yet be entered in Health Passport and Alerts. WDHB: Health various groups that already have survey. Prepare Health Passport user the system. Passport help desk at Masterton Hospital alerts entered in the system. survey reports to share the findings. was launched. HVDHB: Data on all children and CCDHB: Continue with Health adults with alerts being shared with Passport helpdesk at Kenepuru until Te Awakairangi to ensure GPs aware at least December. HVDHB: Prepare of this population, have needs for launch of Health Passport help information and to develop a read desk at Hutt Valley hospital. WDHB: code aligned with that developed by Text reminder be added to Compass Health. WDHB: Continue appointments asking person to to run the Health Passport helpdesk remember to bring their Health at Masterton Medical and at Passport. Launch Help Desk at Wairarapa hospital. Masterton Hospital. Carry out new process to get more Health Passports read coded. 1.1.2 Disability responsiveness will be Education resources to share across the HVDHB: eLearning module HVDHB + CCDHB: Gather evidence integrated into clinical practice in 3DHBs have been developed. Targeted communications to be launched in that staff are applying Disability hospital and health services education sessions delivered to to areas conjunction with other Disability Responsiveness. Questions need to where there is a high proportion of patients Responsinveness Programme be designed to ask staff about what with complex needs. HVDHB: Over 30 staff communications in the Hutt Valley. they have learned and what they are have completed the Disability CCDHB: Staff continue to do the applying in their work, from the Responsiveness eLearning at Hutt Valley. eLearning. Learning & Development eLearning. WDHB: Decide whether CCDHB: New learning management staff to implement improvements to to launch eLearning at WDHB before system was launched and staff continue to eLearning. WDHB: Modify content to the alert is activiated in the system or complete the Disability Responsiveness make eLearning fit for purpose for after. eLearning module. WDHB: Content has Wairarapa. been gathered to make eLearning fit for purpose for Wairarapa.

1.1.3 Disability Action Group CCDHB Champions gave the Disability Advisor / An SRDAG member will continue to Launch of the redesigned Champions Communications and support needs combines with Hutt Valley and Educator feedback on the updated lead the update of the Frequently list. Improving support for to be robust to ensure Champions / Wairarapa DHB to collaborate on joint Champions list. An SRDAG member is Asked Questions. DAG is now Champions. Plans for robust Facilitators are not isolated. initiatives leading and has a plan in place to update aiming to ensure a shared regional communications and support within the Champions Frequently Asked Questions disability policy is in place to guide the network, as well communications and met with the Senior Disability Advisor to shared regional and sub regional to others about the network. consult the plan. Champions email group initiatives. has been set up: [email protected] to email all Champions and [email protected] to email just the Champions list administrator. Inclusion & support 2.1 Disabled children with their families are CCDHB HVDHB WDHB 3 DHB supported to grow, learn, have fun, develop and be connected with their communities. 2.1. 1 2.1.1 Develop a Child to Adult transition A small sub working group was created as The second draft is underway and Draft finialized and circulated electronic pathwaty part of DAG. This group worked to create will go out for wider viewing soon amongst 2nd and 3rd circles the frist pathway draft

2.1.2 Develop a Sub Regional Child to Adult HVDHB: Is being used a pilot site with Tool kit will be trailed in the Hutt Tool kit redraft Transition Family Tool kit families, CDS and Primary Care working Valley toagther to create draft tool kit. CCDHB: CDS and Primary Care being colsulted

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Project Status Recent Work Completed Current Activity Major activities planned next New Risks or Issues month 2.1.3 Develop a Sub Regionlal Child to Adult Transition Policy

2.1.1 RETIRED As part of a single child CCDHB: Data matching between child HVDHB: Data matching with Te 3D health systems pathway will health service an integrated approach development services and primary care is Awakairangi is now underway from provide guidelines for transition for across the 3 DHBs will be used in complete. 3D Focus group met to develop Child Development HVDHB. 3D: those children with congenital and planning for children Child - Adult transition electronic health Child - Adult transition focus group acquired disabilities and/or chronic pathway. Contractor has been engaged (8 will meet again to further develop health conditions. hours / week) to develop resources for Child electronic health pathway. Contractor - Adult transition. will continue to develop child - adult transition resources.

2.1.2 RETIRED Continue work with clinical CCDHB: Data matching between child HVDHB: Data matching with Te 3D health systems pathway will and family group to Cornerstone as part development services and primary care is Awakairangi is now underway from provide guidelines for transition for of a national project to develop a complete. 3D health systems electronic Child Development HVDHB. 3D those children with congenital and module for General Practice around pathway has replaced the plan to work on policy on transition for adolescents is acquired disabilities and/or chronic clinical effectiveness with Disabled locally developed standards for Primary being developed and will be in place health conditions. children and young people Care. 15/16. 2.2 Where we have are role as funder or CCDHB HVDHB WDHB 3 DHB provider, working age disabled people are supported to live as they choose.

2.2.1 Inclusion of disability clause in all new Reporting template has been completed A streamlined reporting framework is Working with the portfolio contracts to enable providers to be more and returned by approximately 20% of being compiled alongside the management team to ensure the responsive providers in 2014/15. A willingness and a portfolio management team, to reporting process is efficient and reasonable standard of reporting has been ensure that reporting is completed by effective. Asking each provider for observed for the first year and will contribute all providers in 2016/17. one new initiative they will put in long term to the necessary integration of place for 2016/17 and utilizing the DR disability responsivene. team where appropriate.

2.3 People with experience of mental illness CCDHB HVDHB WDHB 3 DHB recover and live well 2.3.1 Mental Health Strategic Leadership People with disabilities who use mental EoI process for more Maori and Combined meeting of CLG and ILG Group has disability expertise health services are being included in every Pacific members on the group. Meet taking place this month. round at every level of servuice and greet of members has been set development. The Mental Health, up. Addictions, intelectual and learning disability group now established and has disability perspective on the group. 2.4 Our planning will include how we CCDHB HVDHB WDHB 3 DHB support people with disability 2.4.1 Inclusion of disability focus in all new Disability included in all annual plans SIDU led programme development Continue to ensure disability focus is and reviewed DHB plans and groups targets for different services. Includes now includes the principle that increased and more robust. New staff Primary Care, Mental Health Older People ‘pathways will address health on board for CCDHB, HVDHB and and Children. In 2015/16 the highest disparities experienced by disabled WDHBs to help enable disability standard of integration into planning has people’, as part of explicit equity focus. been achieved. Disability Plan referenced statements and frameworks. within most relevant service specifications Regional Public Health Community and service plans. Dental Service is now developing an action plan for children and adolescents from the sub region based on the data now available to them. 2.5 Older people as far as possible live in CCDHB HVDHB WDHB 3 DHB their own homes, are well supported and optimal independence is restored, and carers are supported with no carer overburdened

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Project Status Recent Work Completed Current Activity Major activities planned next New Risks or Issues month 2.5.1 RETIRED Long Term Conditions Local clinical panel has been disestablished Funding stream for people with LTCs Health of older person services and Clinical Panel supports independence and plans to develop a regional panel are currently being reviewed by MOH. needs assessment services are for under 65s with chronic health on hold. MoH is currently in the process of Work being done between Mental subject to review. In the context of conditions a review and a working group has been Health, Disability Support and Older this review alternative options for established with the 3DHB to scope a Persons Needs Assessment improved placement of people with NASC review. Services to collaborate on complex health conditions who are appropriate models of care and under 65 will be addressed. Key contracting of services. projects under this objective will be reviewed by SRDAG and SIDU in 2016/17.

2.5.2 A regional approach to improving Work being undertaken sub Alternative contracting options will service options will be implemented for regionally to review options for contribute to improved quality of people under 65. younger people with life long placements. This work will be impairments that require pursued more intensively in 15/17 rehabilitation support and expertise. supported by the Health System The Acting CMO HVDHB leading Planning process. this work stream. 2.6 We work with other entities to make our CCDHB HVDHB WDHB 3 DHB district and communities within it caring and more inclusive of everyone 2.6.1 Provide an effective community Lead bby Wellington City Council, the Inter-sectorial work and engagement The hard launch of the community directory to ensure improved access Community Directory was launched online is increasing including with MSD, directory will be scheduled between particularly for those in transition to in 2014/15 successfuly. Utilizing input from MOH, CYFS and Ministry of May-July 2016. adult services. SRDAG and staff the directory is a central Education. point for communication tools.

Access 3.1 Information and communication meet CCDHB HVDHB WDHB 3 DHB everyone's needs 3.1.1 We will develop and implement a New Project part completed. Steering groups Currently working on a finalised draft Next phase is to create an agreed Zealand Sign Language policy held regularly to advise. Written document action plan and tangible outcomes for near completion. of a high level startegic paper, a the DHBs.

plain english paper, a business

board proposal and an NZSL

(seeflow) version. 3.1.2 Increase access to information about 3D disability responsiveness site now has From forums held locally and SRDAG consulted on NASC guide services across internet and intranet significant information on initiatives of subregionally, collaboration is and guide produced ready for Forum. interest across all age groups occurring with Needs Assessment http://www.ccdhb.org.nz/planning/disability/ Services to provide simple and useful information about funding and pathways. NASC template is in progress and will be completed before forum on June 3rd.

3.1.3 Produce newsletter and develop other New SRDAG newsletter has been on hold DR team will lead the production of One newsletter per year will be forms of consumer engagement to invite but a plan has been put together to relaunch the newsletter. sufficient to update consumers feedback on CCDHB projects within the coming months. around the region.

3.1.4 Plain language documentation becomes 3D disability responsivness website Monitoring on a case by case basis. increasingly available across the 3 includes Easy read versions of key DHBs documents.

3.2 Physical environment and signage meet CCDHB HVDHB 3 DHB everyone's needs

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Project Status Recent Work Completed Current Activity Major activities planned next New Risks or Issues month 3.2.1 Improve responsiveness of primary Disability clause placed in all community HVDHB + WDHB: Accessibility audit HVDHB + WDHB: Implementation of care, secondary and community contracts to enable and encourage services implementation plan is being accessibility audit. providers including Primary Care to consider and developed. carry out changes to improve their services. CCDHB: Increased numbers of underground car parks. Feedback given within new planning and BAU. HVDHB + WDHB: Access audits identified areas for improvement. Access audit follow on workshops held. 3.3 Our services are more welcoming and CCDHB HVDHB WDHB 3 DHB responsiveness 3.3.1 Access is improved and monitored CCDHB: Wheelchair scales are now CCDHB: Continue to promote WDHB + HVDHB: Access audit across all DHB sites available for use in the Clincal wheelchair scales to staff and follow up required for implementaion. Measurement Unit. An article to promote the patients. HVDHB + WDHB: wheelchair scales was in Health Matters Accessibility audit implementation (October 2015). Training was provided to plan is being developed. Local staff by the vendor. WDHB + HVDHB: Disability Champions involved. Accessibility audit reports published online. WDHB achieved a gold rating and HVDHB a silver rating. Leadership 4.1 The 3 DHBs will engage with disability CCDHB HVDHB WDHB 3 DHB communities and consumers 4.1.1 Sub Regional Disability Forum is held WDHB: Disability forum was held 29 WDHB: Feedback from people who 3D: Biennial Sub Regional Disability annually October 2015. 3D: Facilitator and planning attended the forum was collated and Forum to be held 3rd June at dates have been booked for sub regional distributed 3 D: Planning and Silverstream Retreat. Guest list forum which will be on 3rd June 2015. preparation underway for sub finalised and agenda confirmed. regional disability forum.

4.2 We will be an employer of choice for CCDHB HVDHB WDHB 3 DHB disabled people and their families 4.2.1 Human resource policies will be aligned An access question has been inserted in Internships for Disabled young 2 working groups to be created - 1) across the 3 DHBs and will support Human Resource Policies and in all job people began in 2014/15. Family to look at the overarching disability employment choices for disabled people applications. 150% increase in staff members of disabled people are policy and 2) to look at local policies. identification of disability. A number of prominently employed across the Mainstream placements have been taken at District Health Boards and their CCDHB including four within SIDU. Three experience is adding value to the out of four found jobs longer term. work across the programme. 4.3 Ensure leadership of and engagement CCDHB HVDHB WDHB 3 DHB with Maori and Pacific people with disabilities 4.3.1 Improve responsiveness for Maori and Pacific Annual Plan has integrated Engagement with the three Maori Continued commitment to disability Pacific peoples with disability in initiatives to support Pacific Disabled people Partnership Boards will be prioritised alert and health passport education accordance with Maori and Pacific to have improved access to culturally to support Maori specific disability within Whanau care. Plans to Disability Action Plans responsive services. Access radio initiatives. Commitment to working progress with a Pacific action plan to programme provided information on NASC within Whanau care and established improve integration of services for for Pacific people in multiple languages and disability alert training. SRDAG Pacific people living with a disability. broadcast information on the Health members Pacific and Maori continue Improved health literacy throughout Passport. SRDAG Maori rep endorsed by to engage with communities. services with a particular focus on the CCDHB Maori Partnership Board. Maori Disability is now part of all annual planning processes.

We will grow and develop through CCDHB HVDHB WDHB 3 DHB 4.4 research and innovation

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Project Status Recent Work Completed Current Activity Major activities planned next New Risks or Issues month 4.4.1 Contribute to research and innovation National and international research used to Analysis of data, contributing to high Health passport research has been HQSC consumer group is currently inform innovation in health service level equity indicators for the sub delayed. Continuing to gather data behind schedule with health development and improved disability region: Data gathering is well for future. Working with Ministry of passport review. responsiveness. Eg development of Deaf underway including qualitative data Health researching further into initiatives and to contribute to the Ministry of to improve patient safety and learning disabilities to improve lives Health national initiative on improving experience. Evaluation of Health throughout the country.National health outcomes for people with learning Passport and other initiatives, NASC review working group. disabilities. Senior Disability Advisor and helping to fill national and Continued initiatives with health HDC staff have met regarding review of international knowledge gaps passport across the three DHBs. Health Passport. Project plan, including (especially related to the experience timeframes has been created. and use of health services). Continue to meet with HDC and project plan to be finalised and implemented.

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Appendix Two NZSL population data

To: Dr Pauline Boyles Senior Disability Advisor Author: Erikka Helliwell (Youth Facilitator)

Date: 30 April 2016 New Zealand Sign Language (NZSL) population data nationally and sub Subject: regionally for CPHAC DSAC RECOMMENDATIONS a. Note that this report contains high level data analysis regarding the use of NZ Sign Language, nationally and sub regionally. b. Note that a more in-depth report will be provided to CPHAC DSAC which outlines recommended policies on NZSL and a five year action plan.

PURPOSE This report provides a snapshot of some of the empirical data which has been collated so far, and which is informing the development of the 3DHB NZSL policy and five year action plan.

Background Sign language represents a means of communication for a community of people that is significant in this country and by all indications is growing.

NZSL is one of three official languages of New Zealand and according to Statistics New Zealand (2013), 10,000 NZSL users identify as bilingual (NZSL + English). The other 10,000 are either NZSL only (1600), or use a make up of different languages. Better understanding of the users of NZSL should also help to eliminate the misconception that people who use NZSL automatically can use written English.

National Census data An estimated 484,000 people (11 percent of the total population) were limited in their everyday activities by sensory impairments (hearing and vision loss) that assistive devices such as hearing aids or glasses did not eliminate.

Hearing impairment affected 380,000 people (9 percent of the total population) and vision impairment affected 168,000 people (4 percent).1

1 Stats NZ Disability Survey 2013

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Data challenges The project has faced a number of challenges in reconciling 2006 data versus 2013 census data in identifying the deaf population due to a 2013 question change in the disability household survey. The Disability Responsiveness team are working with Statistics New Zealand to better understand the impact of the question change and how an approximate deaf population could be calculated in light of this.

One proposed way of getting a better indication of the 2013 population would be to use the variants in the Disability Household Survey. Under the screening category in the Survey, people were asked what type of impairment they have (i.e hearing, seeing etc.) and then cause of impairment such as existed from birth, natural, ageing etc. If the team can gain access to the cause of impairment for people identified as hearing impaired it would be possible to estimate pre lingual deaf and those who have become deaf later in life and why.

What does this mean at a sub region level? Taking the national population prevalence rate and applying it to the sub regional DHBs population, results in approximately 43, 947 people who are affected by a hearing impairment. 2

Hearing Impaired Total Pop 2015 Pop CCDHB 301,100 27,099 WAIDHB 43,200 3888 HVDHB 144,000 12960 Total sub region 488,300 43,947

NZSL use at a Sub Regional level

Below is the NZSL user information by DHB for 2006 and 2013. According to this data set there are 3500 NZSL users in the sub region, up from 2,500 in 2006. This increase in the sub region goes against the national trend in the number of NZSL users which decreased. Again that data represents NZSL user’s not deaf people.

NZSL users by DHB

Languages spoken and 2006 Census 2013 Census district health board area Hutt New Zealand sign language 801 1,017

Capital and Coast New Zealand sign language 1,509 2,205

Wairarapa

2 Adapted from StatsNZ population data 2015 and Disability Survey 2013

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New Zealand sign language 219 234

Sub Region New Zealand sign language 2,529 3,456

Total New Zealand New Zealand sign language 24,090 20,235

Official language indicator census data (2013) The official languages of New Zealand are Maori, English and New Zealand sign. The official language indicator below presents a count of people who speak various combinations of New Zealand’s official languages and other languages. Each person is counted in only one category. The table also consists of people who were too young to talk or unable to speak a language and also excludes residual categories such as response unidentifiable, response outside of scope and language not stated.

Census usually Code Official language indicator resident population count 00 No Language(3) 65,853 11 Māori Only 8,436 12 English Only 3,089,226 13 NZ Sign Language Only 1,644 21 Māori and English Only (Not NZ Sign Language) 123,198 22 Māori and NZ Sign Language Only (Not English) 81 23 Māori and Other Only (Not English or NZ Sign Language) 369 24 English and NZ Sign Language Only (Not Māori) 10,146 25 English and Other Only (Not Māori or NZ Sign Language) 578,919 26 NZ Sign Language and Other Only (Not English or Māori) 465 31 Māori, English and NZ Sign Language (Not Other) 2,637 32 Māori, English and Other (Not NZ Sign Language) 10,611 33 Māori, NZ Sign Language and Other (Not English) 24 34 English, NZ Sign Language and Other (Not Māori) 2,199 41 Māori, English, NZ Sign Language and Other 3,036 Other Languages Only (Neither English, Māori nor NZ Sign 51 Language) 76,515 Total people stated(4) 3,973,359 97 Response Unidentifiable 639 98 Response Outside Scope 216 99 Languages Not Stated 267,837

Total people 4,242,048

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PUBLIC EXCLUDED Appendix 3

Methodology

Numerous methods were used to collect empirical evidence to inform the development of the 3DHB NZSL policy and five year action plan. Below is summary of the methods used. See appendix three for more result content detail.

Steering Group

This project is guided by a steering group of eight people. Five of whom are deaf and two who are hearing children of deaf parents (one of whom is also a qualified NZSL interpreter). The last hearing member is a team leader of a mental health service that has frequently had deaf clients accessing her service. Steering group meetings took place approximately monthly and were conducted primarily in NZSL. The objectives of the group are to:

a. Provide advice and raise questions related to the core assumptions of the project. b. Provide leadership and advice while working in collaboration with the deaf community c. Provide feedback and advice on progress reported by the project leader and steering group members throughout meetings d. Collaborate on and provide feedback on recommendations to the final report

Summary of collection methods in the deaf community

Method Type Number of Number of people meetings: attended:

Focus Groups:

55+ 1 9

General deaf community 1 2

Men only 1 9

NZSL interpreters 1 4

Families of deaf people 1 4

1:1 Interviews 9 9

Online survey NA 15

TOTAL responses: 52

Summary of collection methods within DHB staff:

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PUBLIC EXCLUDED Method Type Number of Number of people meetings: attended:

Focus Groups:

Wellington regional heart and 1 12 lung unit

Kenepuru Rehab ward 1 5

CMHT – Tacy Street 1 10

Admin staff working in mental 1 10 health services

Regional MH social workers 1 20 training day

1:1 interviews 2 2

Online survey responses NA 65

TOTAL RESPONSES: 124

Methodology

Data Analysis

All audio files were transcribed by the project leader and a steering group member and uploaded into NVivo a qualitative data analysis tool. Two copies of the transcripts were printed off and read independently by the project leader and research advisor. This gave the project lead and research advisor an opportunity to independently consider the themes that were emerging. Based on the emerging themes codes were developed for use within the NVivo programme to analyse the results. Some high level themes are identified in the next section.

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NZSL in Health Project Diagram

CCDHB, HVDHB and WAIDHB

Key Areas of the Disability Work Programme Linkages

Strengthening governance and Relationships outside of Disability accountability programme Empowering and engaging people Legislation/Government Reports Coordinating Services Components of Disability Reorienting the model of care Programme Integration of Communities

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Acronyms

• SRDAG: Sub Regional Disability Advisory Group • DAG: Disability Action Group • MHSLG: Mental Health Strategic Leadership Group • MHCLG: Mental Health Consumer Leadership Group • NASCA: Needs Assessment Service Coordination Association • NZSL: New Zealand Sign Language • DSS: Disability Support Services • NGOs: Non Governmental Organisations • DPOs: Disabled Persons Organisations • CPHAC DSAC: Community and Public Health Advisory Committee • MOH: Ministry of Health • HDC: Health and Disability Commission

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World Health Organization, (2016)

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Coordinating Services Empowering and engaging Service people Office of Disability Issues providers Building Community Resilience HRC NZSL enquiry Co-Design with people Deaf who use services Aotearoa NZ Disability Strategy Human Rights Act 2003 Equity monitoring Partnership with for quality Access Inclusion Deaf community improvement DPOs Creating Enabling Environments Ministry of UNCRPD Health – DSS Reducing Health Health Leadership CPHAC Disparities DSAC Health Rights NZSL Act Community Commission 2006 Engagement NZ Health Strategy Health and Empowered Self Integration across Disability Care the health system Commission Capital and Coast, Hutt Valley and Wairarapa Boards Ministry of Reorienting the model of Health – Policy care accountability Key Areas of the Disability Work Programme Linkages Strengthening governance and Coordinating Services Relationships outside of Disability programme Components of Disability Programme accountability Reorienting the Empowering and engaging people Legislation/Government Reports Integration of Communities model of care 199 PUBLIC CPHAC_DSAC Committee Papers 20 May 2016 - APPENDICES

Sub Regional Disability Planning Forum Building Community Resilience ‘Working to create active partnerships’

The Sub Regional Disability Forum will bring together people for an intersectoral planning day, to share experiences and knowledge in order to work together for change.

PURPOSE

∑ To refresh, reform and update the Disability Responsiveness implementation plan for the Sub-region

∑ To celebrate the progress made within health services since the creation of the plan ∑ To create a tangible action plan for the next two years and share responsibility within expert areas

BACKGROUND

The 3DHBs (CCDHB, HVDHB and WAIDHB), alongside the Sub Regional Disability Advisory Group (SRDAG), have committed to continued community engagement, as part of our Sub Regional Disability Implementation Plan.

‘Valued Lives: Full Participation’ was created in 2012 in partnership with disabled people. Through community forums, the voices of disabled people were heard and the plan committed to listening to these people at all levels of discussion.

As part of our continued commitment to strengthening community resilience, there will be a sub-regional forum biennially; the first of which was held in 2013. The local forums which have been held around the sub-region have dictated the strategic agenda and the basis of the Valued Lives: Full Participation plan.

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THE FORUM

∑ Key note address from Honourable Nicky Wagner, Minister for Disability Issues

∑ Information stalls (If you would like to host one please see contact details below)

∑ Sub Regional, National and International disability updates.

∑ More specific workshops with in the areas of Health, Leadership, Access and Inclusion (more details to follow).

∑ Agreements to progress the ideas and action points of the forum.

EVENT DETAILS

Friday 3rd June from 9:30 am – 3 pm

Silverstream Retreat, 3 Reynolds Bach Drive, Lower Hutt 5014, Wellington.

Briefing papers will be sent out 2 weeks before the forum.

RSVP

In order to confirm your place, please RSVP by 9th May 2016 to:

[email protected],nz

04 806 2434 | 021 037 3218.

When you RSVP please let us know any dietary requirements, support or access needs you have. Please also provide your workshop preference by ranking the workshop topics below; 1 being for most favoured subject, 4 for least.

Leadership: Provide and/or share leadership with disabled communities to develop, adapt and meet current and new expectations

Access: Disabled people will have more independent access to services to meet their health and support needs. Information and communication is accessible to all.

Inclusion and Support: Include and promote the full participation of disabled people.

Health: Heath disparities will be reduced by providing best care. The levels of integration across services will be improved.

Topic Health Leadership Access Inclusion and support

Rank

201 PUBLIC CPHAC_DSAC Committee Papers 20 May 2016 - APPENDICES

APPENDIX 1: EQUITY MONITORING INDICATORS

Targets have been included where relevant, along with a traffic light rating system applied according to the key below. Two of the indicators (oral health DMFT and ambulatory sensitive hospitalisations) are not measured as a percentage out of 100; therefore have a slightly different rating system as described in the key.

Performance result Oral health DMFT result ASH ratio Target achieved Target achieved At or below NZ benchmark Within 10% of target Within 0.20 of target mean 101-150% of NZ benchmark 11-20% from target 0.21-0.50 from target mean 151-200% of NZ benchmark Greater than 21% from target Greater than 0.51 from target mean Greater than 201% of NZ benchmark

Note that where data is not provided for Pacific or Asian ethnic groups in Wairarapa it is either unavailable or suppressed due to very small numbers.

Breastfeeding rates (6 weeks) (Maori Health indicator) – note data now includes ALL WCTO providers and is therefore not comparable with earlier data (Plunket only)

Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Maori 61.0 Maori 50.4 Maori 58.5 Pacific 80.0 Pacific 55.2 Pacific 50.8 68 68 68 Q5 61.7 Q5 55.5 Q5 57.3 Total 68.3 Total 60.4 Total 68.5

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Breastfeeding rates (3 months) (Maori Health indicator and Ala Mo’ui indicator)

Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Maori 38.1 Maori 35.0 Maori 46.0 Pacific 60.0 Pacific 44.6 Pacific 43.3 54 54 54 Q5 44.1 Q5 42.5 Q5 45.0 Total 55.1 Total 50.4 Total 61.7 Breastfeeding rates (6 months) (Maori Health indicator)

Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Maori 50.7 Maori 47.7 Maori 52.8 Pacific 75.0 Pacific 64.5 Pacific 59.9 59 59 59 Q5 61.4 Q5 54.7 Q5 59.4 Total 63.0 Total 62.0 Total 72.3

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Health Target: Immunisation at 8 months (Maori Health indicator)

Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Maori 98 Maori 93 Maori 87 Pacific Pacific 92 Pacific 93 95 95 95 Q5 100 Q5 96 Q5 91 Total 97 Total 94 Total 93 Pre-school enrolment in oral health services (Maori Health indicator and Ala Mo’ui indicator)

Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Maori 73 Maori 83 Maori 68 Pacific 85 Pacific 85 89 Pacific 85 87 Other 102 Other 104 Other 103

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School dental examination arrears

Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Maori Maori 11 Maori 12 Not reported by Pacific 5 Pacific 15 12 Pacific 15 12 ethnicity Other Other 8 Other 13 Percentage caries free at 5 years (Ala Mo’ui indicator)

Ethnic group Target (%) Actual Ethnic group Target (%) Actual Ethnic group Target (%) Actual Maori 44 Maori 49 Maori 51 Pacific 68 Pacific 70 35 Pacific 69 41 Other 67 Other 72 Other 77

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Mean number of DMFT (decayed, missing or filled teeth) at Year 8 (Ala Mo’ui indicator)

Ethnic group Target Actual Ethnic group Target Actual Ethnic group Target Actual Maori 0.97 Maori 0.87 Maori 0.76 Pacific 1.15 Pacific 0.81 1.33 Pacific 0.67 1.12 Other 0.6 Other 0.54 Other 0.47 Breast screening rates (Maori Health indicator)

Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Maori 73 Maori 67 Maori 64 Pacific 70 78 Pacific 70 65 Pacific 70 64 Other 79 Other 73 Other 69

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Cervical screening rates (Maori Health indicator and Ala Mo’ui indicator)

Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Maori 69 Maori 69 Maori 63 Pacific 71 Pacific 70 Pacific 67 80 80 80 Asian 62 Asian 76 Asian 67 Other 76 Other 79 Other 85 Health Target: Brief advice to quit smoking in primary care (Ala Mo’ui indicator) *Note change of definition from Q2 15/16

Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Maori 79 Maori 79 Maori 81 Pacific 78 Pacific 75 Pacific 75 90 90 90 Other 86 Other 80 Other 83 Total 84 Total 79 Total 82

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Health Target: Brief advice to quit smoking in secondary care

Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Maori 95 Maori 97 Maori 91 Pacific 95 Pacific 95 97 Pacific 95 92 Total 94 Total 96 Total 93 Health Target: CVD risk assessment (Ala Mo’ui indicator)

Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Ethnic group Target (%) Actual (%) Maori 84 Maori 85 Maori 87 Pacific 83 Pacific 88 Pacific 89 90 90 90 Other 92 Other 90 Other 91 Total 91 Total 89 Total 91 Ambulatory sensitive hospitalisations (0-4 yrs) (Maori Health indicator and Ala Mo’ui indicator)

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Ethnic group Benchmark (%) Actual (%) Ethnic group Benchmark (%) Actual (%) Ethnic group Benchmark (%) Actual (%) Maori 157 Maori 132 Maori 115 Pacific Pacific 213 Pacific 199 100 100 100 Other 90 Other 106 Other 76 Total 111 Total 125 Total 97 Ambulatory sensitive hospitalisations (45-64 yrs) (Maori Health indicator and Ala Mo’ui indicator)

Ethnic group Benchmark (%) Actual (%) Ethnic group Benchmark (%) Actual (%) Ethnic group Benchmark (%) Actual (%) Maori 164 Maori 204 Maori 145 Pacific Pacific 208 Pacific 193 100 100 100 Other 91 Other 93 Other 68 Total 99 Total 113 Total 82 Outpatient did not attend (DNA) rates

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Ethnic group Equity target (%) Actual (%) Ethnic group Equity target (%) Actual (%) Ethnic group Equity target (%) Actual (%) Maori 18 Maori 16 Maori 12 Pacific 6 15 Pacific 6 15 Pacific 6 11 Other 7 Other 5 Other 4 Health checks for long term users of mental health and addiction services

Ethnic group Equity target (%) Actual (%) Ethnic group Equity target (%) Actual (%) Ethnic group Equity target (%) Actual (%) Maori 84 Maori 73 Maori 69 Pacific - 75 Pacific - 74 Pacific - 76 Other 91 Other 87 Other 84

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Specialist mental health service access rates (Ala Mo’ui indicator)

Ethnic group Equity target (%) Actual (%) Ethnic group Equity target (%) Actual (%) Ethnic group Equity target (%) Actual (%) Maori 4.9 Maori 5.3 Maori 5.1 Pacific 5.49 Pacific 4.22 2.2 Pacific 3.74 3.2 Other 4.6 Other 4.3 Other 3.5

Ethnic group Equity target (%) Actual (%) Ethnic group Equity target (%) Actual (%) Ethnic group Equity target (%) Actual (%) Maori 9.3 Maori 8.6 Maori 7.0 Pacific 5.56 Pacific 4.53 4.4 Pacific 3.36 3.8 Other 4.8 Other 4.1 Other 3.1

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Ethnic group Equity target (%) Actual (%) Ethnic group Equity target (%) Actual (%) Ethnic group Equity target (%) Actual (%) Maori 2.8 Maori 2.3 Maori 1.5 Pacific 1.02 Pacific 1.97 2.1 Pacific 1.30 1.2 Other 0.9 Other 2.1 Other 1.0 Mental health and addiction community did not attend (DNA) rates

Ethnic group Equity target (%) Actual (%) Ethnic group Equity target (%) Actual (%) Ethnic group Equity target (%) Actual (%) Maori 7 Maori 16 Maori 10 Pacific - Pacific - 11 Pacific - 8 Other 8 Other 11 Other 8 Mental health and addicition inpatient unit seclusion hours

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Ethnic group Equity target (%) Actual (hours/ Ethnic group Equity target (%) Actual (hours/ Ethnic group Equity target (%) Actual (hours/ 100,000 people) 100,000 people) 100,000 people) Maori Maori 7614 Maori 2635 Pacific Pacific - 1425 Pacific - 376 Other Other 1398 Other 209 Mental health acute inpatients 28 day readmission rate

Ethnic group Equity target (%) Ethnic group Equity target (%) Actual (%) Ethnic group Equity target (%) Actual (%) Maori Maori 20 Maori 9.8 Pacific Pacific - 0 Pacific - 20.7 Other Other 13.9 Other 11.8

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Regional Public Health Better Health For The Greater Wellington Region Public Health Post Public Health for Primary Care in Wellington, Wairarapa and the Hutt Valley

AAlsolso availableavailable onlineonline at www.rph.org.nz April 2016

Imported frozen berries & hepatitis A in the news

Image: CDC/Dr. Thomas F. Sellers. environment for long periods. The virus tolerates freezing Key Points: and high heat.1,3 It is only inactivated in food held at 1 • Hepatitis A is a notifiable disease in New temperatures >85°C for at least a minute. Zealand. Epidemiology • Rates of hepatitis A notifications have decreased National Epidemiology over time in New Zealand. Since 1997, there has been a marked decrease in hepatitis • Over 50% of all hepatitis A notified in New A notifications in New Zealand (Figure 1).4 It is estimated Zealand are acquired overseas. that ~50% of all hepatitis A cases in New Zealand are • Detecting hepatitis A in children is complicated overseas acquired.2 by their atypical presentation. • Treatment of hepatitis A is mainly supportive. • Following a notification of hepatitis A, the public health management includes: interviewing the person who has hepatitis A, identification of possible sources of infection, identifying and managing contacts, and health messaging.

The 2015 outbreak of hepatitis A linked to imported frozen berries received substantial media coverage and highlights the value of notification in identifying sources for outbreaks. Figure 1: Hepatitis A notifications by year, 1997-2014. It is timely to explore this disease in more detail including Source: ESR 2014 Surveillance report. the public health management. In 2014, there were 74 cases of hepatitis A notified in 4 Microbiology New Zealand, giving a rate of 1.6 per 100,000. The notification rates in 2014 were higher in those 30 years of Hepatitis A, a picornavirus1, is a vaccine preventable age and under, and Pacific people. There were no gender illness and a notifiable disease in New Zealand.1,2 A key differences. The most common countries visited by cases feature of the virus is its ability to remain infectious in the over the incubation period were Fiji and Samoa.4

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Greater Wellington Region Epidemiology from 2010-2015 Table 1: Summary of key features of hepatitis A.1,2,6,8 There have been 26 hepatitis A notifications in the greater In adults In children Wellington region from 2010-2015.5 The 2014 peak Incubation period Usually 14-28 days, but can be up to 50 reflects a Lower Hutt outbreak involving an Early Childhood days (WHO). Education (ECE) Service (Figure 2). Clinical Features Prodrome of fever, Often malaise, anorexia, asymptomatic. nausea or abdominal Occasionally pain, followed by present with jaundice and tender atypical symptoms right upper quadrant. of diarrhoea, Pale stools and dark cough, coryza, urine may also be abdominal noted. discomfort, or arthralgia. Jaundice is not a common feature in younger children. Laboratory Features Elevated serum liver May have elevated function tests. liver function tests. Serology Elevated IgM anti-HAV antibodies (in the absence of recent vaccination). Figure 2: Greater Wellington region hepatitis A notifications by year, 2010-2015. PCR PCR can be used to genotype hepatitis A virus. Up until recently, PCR has Cases during this time period have been 58% female and not been routinely available in NZ for clinical samples. In the future it may be 42% male.The greatest percentage of notifications were utilised more frequently for facilitating in those aged 20-39 (38%). New Zealand Europeans the diagnosis of hepatitis A (e.g. when accounted for the highest proportion (34%) of cases, IgM serology is unclear) or assisting in an outbreak investigation. followed by people of Pacific (31%) and Asian (23%) ethnicity. The majority of the notifications resided in Case definition A clinically compatible illness with confirmatory serology. Wellington City (38%) and Lower Hutt City (35%). Overseas travel was reported in 73% of all notifications.5 Period of infectivity 1-2 weeks before and 1 week following the development of jaundice. Children may Route of transmission and outbreaks have prolonged viral exertion.

The primary route of hepatitis A transmission is the faecal- General Management oral route.2 Treatment of hepatitis A is supportive, and may require Given the viruses environmental resilience, hepatitis A can hospitalisation.1,2,6 Fulminant hepatitis may occur which will contaminate food and water, which can lead to common- require specialist management.1,6 Complete resolution of source outbreaks.1,2 Common foods that have been linked to symptoms and normalisation of liver function tests usually hepatitis A outbreaks include: shellfish, frozen berries and occurs within a few months following acute infection.1,6 vegetables.1,2,6 In 2015, a cluster of hepatitis A cases in New Zealand was linked to imported frozen berries. Public health investigation and management of hepatitis A Secondary cases are more common in household or sexual contacts, and in ECE Services. In the latter, symptomatic Once a hepatitis A case has been notified to Regional adults may be the first cases diagnosed associated with Public Health, the primary public health goal is reducing an ECE Service, as the disease can present as a non- or preventing its spread within the community. This is specific gastrointestinal illness in children. Large hepatitis A achieved through a multi-faceted public health response, outbreaks have previously occurred in New Zealand in ECE the details of which are outlined below. 7 Services, such as the 2006 Christchurch outbreak. Managing the public health risk Clinical features and case definition The first aspect of the response is ensuring the notified case is appropriately managed, which requires:2 One of the challenges with identifying hepatitis A infection • Use of appropriate infection control precautions, such is that it presents differently in adults and children.2 The as isolation and hygiene messages. key clinical features and case definition of hepatitis A are summarised in Table 1. • Exclusion, especially if from a high-risk group (e.g. food handlers, staff at health centres, staff at ECE Services), from school and work till at least one week from the onset of jaundice or symptoms.

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Identification of a possible source of infection • Secondly, highlight the importance of effective hand washing for preventing the spread of disease, especially The ill person is interviewed about travel, overseas visitors, following going to the bathroom and before preparing contact with ill people, and foods consumed during the food; exposure period. This interview aims to identify possible sources of infection, and protective factors (e.g. previous • Thirdly, advice to contacts (including those contacts vaccination).2 who have received PEP) that if they develop compatible symptoms within the next 50 days from last contact Identifying and managing contacts they should exclude themselves (or their children) from In New Zealand, a hepatitis A contact is defined as:2 work, school, or social events until they have been 1. A person who was in contact with the case over the given a diagnosis by their GP; infectious period (Table 1), including: • Fourthly, advice that any symptomatic person SHOULD a. Household and sexual contacts. NOT PREPARE OR HANDLE FOOD FOR OTHERS b. Staff and children in close contact (e.g. nappy until cleared by their GP or Public Health; changing) at an ECE Service. • Finally, that a case should have their own towel, 2. Persons exposed to a contaminated common source or facecloth and toothbrush, and not share these items. to potentially contaminated food via an infected food handler. Wider public health messaging (e.g. through the media) may be indicated in certain circumstances, such as a Once identified, any contacts with clinically compatible common source outbreak. symptoms should be tested for hepatitis A (serology and liver function tests), have a clear history taken and take Further information precautions to prevent infecting others (including excluding Further Information on hepatitis A and the public health themselves from work, school, or social events), until management of a case can be found at the following results have returned. websites: Any healthy contacts should be provided with health advice Ministry of Health website: (see health messaging below) and be assessed for post- https://www.health.govt.nz/your-health/conditions-and- exposure prophylaxis (PEP). PEP is used to help prevent treatments/diseases-and-illnesses/hepatitis the spread of hepatitis A.2 PEP options currently available include vaccination or immunoglobulin (see Table 2). Communicable Disease Control manual: Table 2: PEP options and indications.2 http://www.health.govt.nz/publication/communicable- disease-control-manual-2012 Vaccination Immunoglobulin Indication Age-appropriate Contacts under 1 year References vaccination is of age. recommended for all When vaccine is 1. Bennett, J.E., R. Dolin, and M.J. Blaser, Mandell, Douglas, close contacts age >1 contraindicated. and Bennett’s principles and practice of infectious diseases. year. People at high risk of 8th edition ed. 2015: Elsevier Health Sciences. severe disease. 2. Ministry of Health, Communicable Disease Control Manual. Timeframe Should be given Should be given within two weeks within two weeks of 2012, Ministry of Health: Wellington. of last exposure to last exposure to 3. Centers for Disease Control and Prevention, Hepatitis A infectious case. infectious case. Questions and Answers for the Public. In high-risk situations (e.g. ECE Service or infected food 4. The Institute of Environmental Science and Research Ltd, handler), a risk assessment will be done to determine who Surveillance Report - Notifiable Disease in New Zealand requires PEP and the most appropriate PEP. In the case of 2014. 2015: Porirua. an infected food handler, other food handlers will be offered 5. The Institute of Environmental Science and Research Ltd, PEP. In certain circumstances, PEP may also be offered to EpiSurv. 2015, The Institute of Environmental Science and Research Ltd. patrons who ate food prepared by an infected food handler.2 6. Uptodate, Overview of hepatitis A virus infection in adults. Health messaging 2015, Wolters Kluwer. 7. Booker, J., Disease tracked to childcare centre, in New The final aspect of the public health response is Zealand Herald. 2006. communicating key public health messages to cases and 8. Hewitt, J., Personal Communication with specialist ESR contacts, which include:2 virologist. 2015. • Firstly, a brief understanding of the disease, its 9. Hepatitis A case image: CDC/ Dr. Thomas F. Sellers; Emory incubation period, clinical symptoms and infectious University. 1963 Public Health Image Library (PHIL) image period; #2860.

216 PUBLIC CPHAC_DSAC Committee Papers 20 May 2016 - APPENDICES what are you reporting Three months of notifiable cases in the hutt valley, wairarapa and wellington

Table 1: Notifiable cases in the Hutt Valley, Wairarapa and Wellington 1/12/2016 - 29/2/2016. Number of confirmed cases (with additional ‘probable’ cases in brackets) Notifiable Condition Hutt Wairarapa Wellington Totals Campylobacteriosis 49 114 20 183 Cryptosporidiosis 1 10 11 Dengue fever 1 5(1) 6(1) Gastroenteritis 1(5) 8(16) 1(2) 10(23) Giardiasis 4 36 2 42 Hepatitis B 1 1 Invasive pneumococcal disease 2 2 Legionellosis 5 6 0(1) 11(1) Leptospirosis 1 1 Listeriosis 1 1 Malaria 2 1 3 Meningococcal disease 3 3 Paratyphoid fever 1 1 Pertussis 8(6) 15(7) 1 24(13) Salmonellosis 13 27 4 44 Shigellosis 2 2 Taeniasis 1 1 Tuberculosis disease 1(1) 5(1) 6(2) VTEC/STEC infection 2 2 Yersiniosis 11 17 1 29 Zika virus 3 4(1) 7(1) Totals 102(12) 258(26) 30(3) 431(41)

Notes • The three malaria cases were acquired overseas, with travel within the incubation period including to Sudan and Kenya. • The leptospirosis case had exposure to contaminated water in a bat cave. • Cases of dengue infection were acquired overseas including in Samoa, Papua New Guinea, Cook Islands and India. • Legionella cases nearly all had contact with potting mix used for gardening. • Four people with symptoms of ciguatera fish poisoning had consumed marine eel brought from Samoa to New Zealand and are included in ‘gastroenteritis’ in the table above. • Eleven of 24 cases of confirmed pertussis were from Kapiti area, principally from a community of people who had chosen not to receive vaccination. • Salmonella cases’ exposures included: consumption of BBQ food, undercooked chicken, raw milk, and by exposure overseas to contaminated water. • Zika cases were exposed in the Pacific Islands (especially in Samoa), and one case was exposed in Brazil. • One case of cutaneous diphtheria was investigated but was found to be a non-toxigenic strain of the bacteria, and so is not included above.

Sources 1. ESR. Episurv database of notifiable conditions accessed 9/3/2016. 2. Regional Public Health case notes.

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Figure 1: Notifiable cases in the Hutt Valley, Wairarapa and Wellington 1/12/2016 - 29/2/2016, tabulated by territorial authority. PUBLIC CPHAC_DSAC Committee Papers 20 May 2016 - APPENDICES

To swim or not to swim - algal blooms in recreational water

Image: Benthic cyanobacteria floating raft Mangaroa River, 2008. Image courtesy of: Greater Wellington Regional Council.

This article will explore the health impacts of cyanobacteria Key public health messages: and the public health management of our recreational waterways. 1. Toxic algae (cyanobacteria) are present in our regional rivers and lakes/ponds. There are two types of cyanobacteria that pose a risk to 2. Toxic algae pose a health risk via the release of humans: toxin during a bloom. • Planktonic: these are free-floating and found in lakes or ponds; and 3. Significant human exposures to toxic algae remains rare in New Zealand. • Benthic: forms clumps or mats within rivers. 4. Pets (especially dogs) are more likely to be Why are algal blooms hazardous? exposed. In their normal low concentrations, cyanobacteria pose 5. Regional Public Health works alongside the no health threat. However, when an algal bloom occurs, region's councils to ensure our recreational waters cyanobacteria can produce harmful toxins or cyanotoxins are safe and to manage the risk of exposure to at high concentrations and cause harmful effects. Not algal blooms. all species produce toxins and even those that do, don’t produce toxins all of the time. As testing for toxins is not usually practicable, it is safest to assume that cyanobacteria Our rivers and lakes in New Zealand are populated by contain toxin. The key exposure routes in humans are cyanobacteria (formally known as blue-green algae, they ingestion (e.g. consuming algae or water contaminated are bacteria that obtain energy through photosynthesis). with cyanotoxins), aspiration or direct physical contact. Normally, these stay at low levels and are not problematic. Certain animals (e.g. fish and birds) can accumulate toxins, In certain circumstances - warm weather, low water flows making them another exposure risk if eaten. Acute exposure and the presence of nutrients - cyanobacteria can rapidly to cyanotoxins can result in a myriad of clinical features, grow into an algal bloom and produce toxins which are which will be different depending on the exposure route and harmful to health. Weather during this recreational water the type of cyanotoxin (Table 1). season has provided perfect conditions for algal blooms in some of our rivers and lakes.

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Table 1: Clinical features of exposure to toxic algae.

Exposure Route Clinical features Ingestion or aspiration of toxic General: Fever and fatigue. algae Respiratory: Inflammation of the OR aero-digestive tract, breathing Ingestion or aspiration of water difficulties and pneumonia. contaminated with cyanotoxins Gastrointestinal: Nausea, OR vomiting, diarrhea and elevated liver enzymes. Ingestion of animals (e.g. fish) from contaminated water. Renal: Acute kidney injury. Neurological: Headache, paresthesias and cramping. Contact with skin or mucous Conjunctivitis, dermatitis and membranes. blistering.

It is rare for humans to suffer serious health effects from cyanotoxin exposure. However, deaths have been recorded internationally following cyanotoxin contamination of drinking water.

In contrast to humans, animal exposure is more common Figure 2: Shoreline scum of an algal bloom. (especially dogs). This can result in death of the animal, usually after the animal has ingested cyanobacterial mats. In a river Animal exposures and deaths often cause great concern in Benthic cyanobacteria are the major cause of algal blooms the community. in rivers. They can cause dark brown or black mats on river How to identify an algal bloom rocks or the riverbed. These can dislodge and wash onto the river bank or form rafts (Figure 3). In a lake or pond Planktonic cyanobacteria are responsible for causing algal blooms in lakes and ponds. At high levels they tend to make the water cloudy and murky. Surface scum and globules of algae may also be visible. In heavier blooms, the water may look like ‘pea-green soup’ (Figure 1, 2).

Figure 3: Benthic cyanobacteria in the Hutt River, 2008. Image courtesy of: Greater Wellington Regional Council.

What to do if you have a patient with a suspected exposure?

If someone presents to you with a suspected cyanobacteria exposure that may fit with the symptoms in Table 1, please contact the National Poisons Centre on 0800 764 766 for advice, and notify Regional Public Health by calling

Figure 1: Algal bloom in a lake/pond. (04) 570 9002. Useful information to gather from the patient includes: site of exposure; activity or reason for suspecting cyanobacteria exposure; intensity of exposure (e.g. duration, likely ingestion of water); onset, duration and nature of symptoms; and, whether others have been exposed (with or without symptoms).

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What is the role of public health in algal blooms? 2. If you see a toxic algae warning or identify toxic algae in the water: Regional Public Health’s role in addressing algal blooms is a. Do not swim or enter the water. two-fold: b. Put your pets on a leash. 1. To take notifications from GPs to inform action that 3. If you think your animal has eaten toxic algae: needs to be taken to prevent further exposure and a. Take your animal to the vet immediately. increase understanding of human exposure and illness to cyanotoxins. 4. If you think you have been exposed and may have symptoms related to toxic algae: 2. To work alongside our councils to: a. Seek medical advice, for example from your a. Ensure our regions' recreational waters are safe. general practitioner. b. Assist with risk communication when any b. Contact the National Poisons Centre on recreational water source poses a health risk. 0800 764 766 for advice. c. To help improve the community understanding of toxic algae and the means to reduce the risk of Where can I find more information? exposure. Further information on toxic algae and the current status of What are the key risk communication messages our recreation water can be found at http://www.gw.govt. for the public? nz/summer-check

1. Toxic algae can pose a health risk in our recreational water.

Disease notification – how your general practice can help In 2013 Regional Public Health launched the Public Health Disease Notification Manual to assist in the disease notification process. Updates for this manual are located at http://www.rph.org.nz To enable our staff to promptly initiate disease follow up we need your help in the following ways: 1. Inform your patient of the illness they have been diagnosed with or exposed to and that public health staff may be in contact 2. Notify Regional Public Health of the disease within a timely fashion (after the case has been informed) - by phone for urgent notifications (as soon as you are aware), or by faxing a case report form for non-urgent (within one working day). You can find a list of urgent vs. non-urgent notifications on the Regional Public Health website under Health Professionals > Notifiable Diseases. 3. Complete all sections of the form, especially: • work/school/early childhood centre information • name of parent or guardian for a child under 16 years old. The 3D HealthPathways includes a pathway on reporting notifiable diseases: http://3d.healthpathways.org.nz

Public Health Alerts Regional Public Health communicates public health alerts Please contact Regional Public Health on (04) 570 9002 if to primary care practices by fax and by email. These you have not been receiving alerts, or to check and confirm communications often contain information that needs to be that we have your correct details. urgently taken on board by general practitioners and primary If you are not yet receiving alerts by email, and would like care nurses. to, then you can provide your email address via phoning the number above.

To order any Ministry of Health resources, please contact the Health Information Centre Ordering pamphlets and posters: on (04) 570 9691 or email [email protected]

For enquiries regarding the Public Health Post, please contact Dr Jonathan Kennedy, medical officer, Regional Public Health, by email [email protected] Produced by: Regional Public Health or by phone (04) 570 9002. Alternatively contact one of the regional medical officers of Private Bag 31-907, Lower Hutt 5040 Ph: (04) 570 9002, Fax: (04) 570 9211 health: Dr Jill McKenzie, Dr Craig Thornley, Dr Annette Nesdale and Dr Stephen Palmer.

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