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Patient Information Forum Personal Health Records: Learning from voices of experience

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National Louise Coghlin Claire Murray and Nicole Naylor and Nicole Murray Claire www.pifonline.org.uk [email protected] @PiFonline patientinformationforum Personal Health Records: learning learning Health Records: Personal experience of voices from Author: Editors: Information Patient the by Published Forum, January 2017 the from a grant by Funded Information Board To find out more about PIF, our work work our PIF, about more out find To to: go members our and

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and online groups. newsletter, events, guides, query guides, events, service newsletter, members and the wider health information members information and the wider health email a weekly include These community. PIF provides a range of services for its its for services of range a provides PIF in every country in the UK. the in country every in with members in all healthcare sectors and sectors healthcare all in members with PIF is a non-profit, independent organisation a is non-profit,PIF independent organisation wellbeing and choices. care wellbeing make informed decisions about their health, health, their about decisions informed make high-quality and accessible information, supportswhich people understand to and organisations to provide person-centred, provide to organisations UK. We do this by supporting individuals and UK. supporting by do this individuals We healthcare experience of people the healthcare across We are committed to improving the the improving to committed are We for everyone working in, and involved with, with, for everyone working and involved in, and support. information healthcare UK membership organisation and network UK membership organisation The Patient Information Forum (PIF) is the the is (PIF) Forum Information Patient The The Patient Information Forum Information The Patient Page 2 Page 1 2 3 4 5 6 7 8 9 10 11 Feedback Appendices + Reading –

, ‘Personal www.pifonline.org.uk www.pifonline.org.uk , the Nuffield Trust’s Trust’s , Nuffield the ‘Personal Health Records: Guide to Health Records Access We start by exploring what sorts of PHRs are are sorts PHRs of what exploring start by We we Then them. want might who and available highlighted people that PHRs of aspects discuss a with concluding important, most the being as consider. to things key of checklist first-hand or using experiencefirst-hand of developing or reasons, forthem personal or professional a you give will guide this that hope – we both lives. people’s impact could PHRs how of flavour reports such existing in information on builds It Physicians’ of College Royal the as Review’ Landscape (PHR) Record Health 2020health.org’s Putting patients in control?’ Care’ Health Digital of Benefits the ‘Delivering 2013 PIF’s and unnecessarywithout of content. duplication every from section every write can’t As we health with engage all we as and perspective, some as well (as perspective a personal from written we’ve one), a professional from us of of perspective the from content the of much their for PHR own their using is who someone own personal reasons. opinions of people who care passionately about of peopleopinions who passionately care have who – people PHRs of success a making and you are wondering about how they they how about wondering are you and PHRs with interact might might PHRs how wondering are you and care effective and safe deliver to you help that information for looking are you and and commission for, plan to you helps PHRs.implement

you are a health and care professional or manager care social or NHS an are you commissioner you are using an mHealth app, wearable or or wearable app, mHealth an using are you another health-related device

by people who know a great deal about PHRs, PHRs, about deal a great know who people by the about passionately speak who people challenges the and PHRs of benefits potential for well work they ensuring in face we everyone. By exploring the experiences and While researching this guide, it quickly started universes. two parallel are there if as feel to almost know who people by inhabited is One them, used haven’t and PHRs about nothing PHRs by underwhelmed seem who people them. in uninterested and universe much smaller, is inhabitedAnother, About this guide About

users and the general public general the and users and you are wondering whether PHRs can can PHRs whether wondering are you and service carers, patients, reach to you help and you are wondering whether PHRs PHRs whether wondering are you and person’s that understand to you help can help can you best how and needs liaise with health and care professionals and you are wondering whether PHRs PHRs whether wondering are you and own your understand to you help might situation, self-manage your care, and and you are wondering whether PHRs PHRs whether wondering are you and you help might

health information and support you create or provide consumer or patient patient or consumer provide or create you perhaps a friend or relative – with their their – with relative or a friend perhaps health and care you would like to help someone else – else someone help to like would you you have a long-term condition or other other or condition a long-term have you health need you are keen to live a healthy lifestyle, and and lifestyle, healthy a live to keen are you well and fit stay

(PHRs). This could be if... could This (PHRs). to find out about Personal Health Records Records Health Personal about out find to This guide is for anyone who would like like would who anyone for is guide This

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and of of and

and work and work www.pifonline.org.uk www.pifonline.org.uk resultant action plan National Information Board’s ‘Personalised Health and Care 2020 Action’ for - A Framework the a tangible provide They streams. digital use all can we how of example health our improve us help to tools and self-manage our care needs. We are very grateful to the National National the to very grateful are We BoardInformation for the grant our support to provided they partas guide this of development Ready a Digital ‘Building their of Workforce’ Programme. part the of integral an are PHRs 1 medical records.’ a fact that underlines the wisdom and and wisdom the underlines a fact that of control patients give to efforts of importance their own Godlee,Fiona writing in the BMJ able to see all my records on my mobile phone, phone, mobile my on records my all see to able and primary between integration seamless with contribute to be able to like I’d care. secondary them.’ of control be in and records those to Michael Seres as it’s that helpful be so should PHR ‘Your account. bank your as life your in prominent be should You It be should Facebook. your can.’ you as often as it at looking Declan Hadley health a personal getting now is cat your ‘Even message.’ my That’s it. with on get so record, Adrian Byrne know who people only the that out turns ‘It patients... the are works system whole the how boundaries, organisational the cross they Only ‘With my NHS number as my pin, I’d like to be to like I’d pin, my as number NHS ‘With my www.bmj.com/content/344/bmj.e3959.full.print , and we will do our our do will we , and About this guide About

best to include it on the PIF website. PIF the on it include to best knowledge-base in this resource, via our our via resource, this in knowledge-base ‘invitation to feedback’ Please do share information on any the to add would that projects or research and we recognise there are experiences to able been not have we that views and include. The guide is not, therefore, a therefore, not, is guide The of PHRs review academic comprehensive produce the eRedbook. We also consulted consulted also We eRedbook. the produce were us told people that publications particularly interesting. talks at UK eHealth Week (May 2016) 2016) (May Week eHealth UK at talks who Sitekit, by organised event an and using or working with PHRs. When When PHRs. with working or using interviewed we content, the researching people on a one-to-one attended basis, This guide provides a snapshot of the the of a snapshot provides guide This experiencesof people who currently are Can you help to build build to help you Can understanding?

Editor’s Choice. Integrated Editor’s care what is all we want. Fiona Godlee

About this guide this About Page 4 Page 1 1 2 3 4 5 6 7 8 9 10 11 Feedback Appendices + Reading

- www.pifonline.org.uk www.pifonline.org.uk - Vice President of of President - Vice - DeafBlind - General Practitioner, - General Practitioner, - GP and Digital Clinical Clinical Digital and - GP - Managing Director, Consultant Clinical Oncologist, Oncologist, Clinical Consultant Cambridge Hospital, Addenbrooke’s Koczan Dr Phil Online for Patient Champion Leicester Dr Howard professional in Health Informatics, recent the and England NHS RCP, RCGP, to Advisor review Hours’ of ‘Out Scottish Charles Lowe Digital Health and Care Alliance (DHACA); Immediate Past President, and Telemedicine Medicine of Society Royal Section, eHealth Dr Amir Hannan Centres; Medical Thornley Haughton GP local ltd, Healthcare Orbit Director, Co-Chair Manchester Federation; Greater Equality the of Member Group; Values NHS Diversity Council, NHS England; Chair West of Chair Committee; Medical Local Pennine LMCs Manchester Greater of Association the Humphreys Dr Lloyd Know Best Patients Development, Business PhD FRCR FRCP, Jefferies Dr Sarah

- Retired GP and currently currently and GP - Retired - Director, Maldaba Ltd Maldaba - Director, - Consultant in Diabetes Diabetes in - Consultant - Digital Health Lead, - Carer - Type 1 Diabetic, Diabetes Diabetes 1 Diabetic, - Type - Digital Accessibility Lead, Lead, Accessibility - Digital - Senior Product Manager, Lancashire & South Cumbria Change Programme Dr Pete Davies Dr Pete West & Sandwell Endocrinology, and Birmingham Hospitals NHS Trust Tim East EMIS Health ElliottBruce and OD Senior and member, PPG and UK Learning Manager at NHS Digital Dr Richard Fitton Activator Patient and Literacy Health Patient access record for responsibility with Lead two at accuracy record and systems England of North West the in practices Vicky Gardner Lorenzo Gordon Declan Hadley Kevin Cross Texthelp Ltd

- Chief - Chief - ICT Programme - ICT Programme - Professor of Health - Long-term patient, Chair Chair - Long-term patient, - Director of Informatics, Informatics, of - Director Acknowledgements Cambouropoulos

(South), NHS South, Central and West West and Central South, NHS (South), Support Unit Commissioning Peter Digital Manager, Transformation Adrian Byrne University Hospital Southampton NHS Foundation Trust Patient Group (Winner of the 2016 award award 2016 the of (Winner Group Patient UK) the in Group Patient best for Ingrid Brindle Ingrid Centres’ Medical Thornley Haughton of Dr Mohammad Al-Ubaydli Executive, Patients Know Best Informatics Research and the University of of University the and Research Informatics Manchester Dr John Ainsworth Dr John Health for Institute Farr The Informatics,

Acknowledgements the guide: who we interviewed and that we quote in in quote we that and interviewed we who resource, including the following people contributed their invaluable input and and this writing experience researching to We would like to thank everyone who who everyone thank to like would We Page 5 Page 1 2 3 4 5 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk All web links included in the references were accessedbetween April and October 2016. - Professor of of - Professor - Long-term patient - Long-term patient - Freelance expert on - Freelance - Long-term patient, Founder/ - Long-term patient, - Head of Application Application of - Head - Barrister, Cloisters, London Cloisters, - Barrister, - Project Officer, Cancer Cancer Officer, - Project - eRedbook Programme Programme - eRedbook Acknowledgements

Informatics Unit, Royal College of Physicians Medicine, University of Southampton; Clinical Lead for Health New Technologies, Professor Jeremy Wyatt Jeremy Professor Digital Healthcare & Wessex Director, Institute ofHealth & Research, Faculty of Development, University Hospital Hospital University Development, Birmingham NHS Foundation Trust Lisa Sullivan Jim Williams Laura Smith Research UK Michael Seres 11Health CEO Informatics Network,Informatics Elected member, Health & Social Care techUK Council, social care IT systems, Programme Manager ADASS care’ for Online Citizens ‘Engaging and Scientist, Exeter and Scientist, Richard Pantlin Director, Sitekit Shahid Muhammad Dan Moulin

Acknowledgements Page 6 Page 1 2 3 4 5 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk 53 61 63 64 65 68 70 73 74 8 18 21 25 29 33 35 39 47 ......

......

Some definitionsPersonal of Health Records National plans for PHRs in Wales, Scotland and Northern Ireland Northern and Scotland Wales, in PHRs for plans National Technical considerations Technical Policy drivers and government initiatives in England Summary Care Records ......

Contents

Further reading Appendix D: Appendix E: Appendix B: B: Appendix C: Appendix Feedback A: Appendix 11: Where to next? to Where 11: 9: Evidence of impact9: Evidence PHRs with consider to things key of Checklist 10: 7: Doing more for ourselves for more Doing 7: use of Ease 8: 5: A more complete picture of you of picture complete A more 5: security6: Privacy, and share to consent 3: Understanding your PHR Understanding your 3: you help can who people with Communicating 4: 1: What types of PHRs are available? types are What PHRs of 1: PHRs? want might Who 2:

Page 7 7 Page Contents 1 2 3 4 5 6 7 8 9 10 11 Feedback Appendices + Reading

www.pifonline.org.uk www.pifonline.org.uk as well as the role of people on the social care care social the on people of role the as well as and are, carers informal person’s the who side, what their personal preferences are.’ expertRichard (an Pantlin on social care IT systems) you, and everyone else who’s involved in your your in involved who’s else everyone and you, holistic a more access, give you whom to care who’s see could You care. and health your of view recorded what, make corrections and ask for youunderstand. don’t about things clarifications find see, you jargon any up look could You of a means as it use and groups support peer team. care and health your with communication own your manage to you help would PHR Your how and what about consult to who explain care, a crisis…’ in help get to would this like a record to access a carer, ‘If you’re going what’s fully more understand to you help get to be difficult can It one. loved your with on moment.’ the at need you information the all a to access professional, care or a health ‘If you’re holistic an you give would PHR definitive single, on information with person, whole the of view on, so and results test visits, consultant visits, GP ‘If you had a single, definitive PHR, it would give give would PHR,it definitive a single, had ‘If you . Appendix A . section 10 You can find a more extensive checklist of checklist extensive more a find can You out look to functions and features possible in PHRs in for describes quote following the believe We perspectives: many from well really things the best term to use. Is it right to include include to right it Is use. to term best the word the not but ‘health’ word the it make itself name the Should ‘care’? a ‘digital’ about talking are we that clear space and highlight opportunities for between information and patient ‘sharing’ user term the Is professional? healthcare it should friendly be enough; catchier? term the that decided we end the In itself PHR, or Record, Health Personal everything, say to have necessarily doesn’t seems it because it, with stuck we and widely and recognised most be the to But discussing. are we what for term used descriptions other that recognise do we not is ‘PHR’ that and used, being are necessarily the optimum terminology. used PHRs of definitions included We’ve by other organisations in We also took a step back and considered considered and back a step took also We even is Record’ Health ‘Personal whether

What types of PHRs are available? types of PHRs are What

professionals.’ are involved in your care - be they family family - be they care your in involved are care and health or friends, and members enables you to share information from who people with wish, you if PHR, your allows you to do things such as make make as such things do to you allows appointments,communicate with others them meet and yourself for goals set or you to understand and manage your your manage and understand to you well live and care and health data from health any and fitness devices helps that information any and use, you about you including yourself, things add you lets brings together into one place place one into together brings information from all the records that health and care professionals create What types of PHRs are available? types are PHRs of What

‘A personal digital‘A space for health and care information that, ideally…

1: a loose definition asfollows: a loose definition ‘How are you defining a Personal Health Health Personal a defining you are ‘How forward put we started, things get To Record?’. During our research, almost everyone asked asked everyone almost research, our During Page 8 Page 1 2 3 4 5 6 7 8 9 10 11 Feedback Appendices + Reading www.medscape. www.pifonline.org.uk www.pifonline.org.uk www.england.nhs. www.forbes.com/sites/ www.marketsandmarkets.com/Market- indicators.hscic.gov.uk/webview www.ons.gov.uk/businessindustryandtrade/ www.gov.uk/government/publications/the-uk- www.reform.uk/publication/the-future-of-public- Medscape Medical News. Number of Health Apps Soars, but Healthcare UK, Departmentof Health & and UK Trade NHS Digital. NHS Digital Indicator Portal. Patient Online Ofcom. The communications market report, 4 August 2016, Office for National Statistics. Statistical bulletin:Internet users Ofcom. The communications market report, 4 August 2016, Reform. The future of public services:digital patients. May Forbes. BeWorth Market Wearable $34 To Tech Market and Markets. Smart Home Market Product by Use Does Not Always Follow. Sept 2015. Use Does Not Always Sept Follow. 2015. com/viewarticle/851226 2016. services-digital-patients Billion Feb 2016. By 2020. paullamkin/2016/02/17/wearable-tech-market-to-be-worth- 34-billion-by-2020/#5369809e3fe3 Occupancy (Timer, Control (Lighting Sensor, Daylight Sensor), Security Control, Entertainment, & Access HVAC, Home Healthcare and Smart Kitchen), Software & Service Forecast Global - Geography and Proactive), (Behavioral, May 2016. 2022. to Reports/smart-homes-and-assisted-living-advanced- technologie-and-global-market-121.html?gclid=COu174Oqts 0CFdIV0wodcTwDBg proposals for the NHS. Dec 2015. uk/2015/12/martha-lane-fox Investment. The UK. Your partner The UK.Investment. for healthcare solutions. Your Jan 2015 your-partner-for-digital-health-solutions Services. POMI. stakeholders.ofcom.org.uk/binaries/research/cmr/cmr16/uk/ CMR_UK_2016.pdf in the UK: 2016 itandinternetindustry/bulletins/internetusers/2016 stakeholders.ofcom.org.uk/binaries/research/cmr/cmr16/uk/ CMR_UK_2016.pdf NHS England. News. Martha Lane sets Fox out digital key

8 9 10 11 2 3 4 5 6 7 7

11 8 9 10 globally – is forecast forecast – is globally by 2022, with home home with 2022, by 150,000 mHealth150,000 apps , worth US$34 billion, will will billion, US$34 , worth 411 million smart 411 US $46.97 billion in 2015 2015 in billion $46.97 US $13.7 billion $13.7 can help people to better manage manage better to people help can their health and unnecessary avoid GP visits and hospital admissions.’ NHS England ‘Digital heath tools and information information and tools heath ‘Digital There are more than stores. apps Android and iTunes Apple the in already – which market health mobile The at stands annually. 34% by grow to predict Estimates wearable devices – devices wrist-based with 2020, in be sold – trackers fitness and smartwatches as such continuing to dominate. expected is market home smart global The from grow to billion $121.73 US to of classes key six of one being healthcare products in this market.

for , up , up 50% use use 50% 94.6% of of 94.6% Almost for patients 5 , according to a to , according ) aged 16-24 were were 16-24 ) aged UK adults have have adults UK

4 and more than 99.2%

) adults aged 75 and over. over. and 75 aged ) adults 6 2 38.7% 3 of adults had recently (in the the (in recently had adults of of disabled adults had never used used never had adults disabled of 0.4% of patients are registered are patients of 0.4% nine in ten (86%) ten in nine of adults had never used the internet, internet, the used never had adults of What types of PHRs are available? types of PHRs are What 87.9% 25%

10.2% and all younger adults ( around with compared users, internet recent four ( in ten that internet. used the 3 months) last internet access at home. at access internet showed UK the in year this earlier from Data this service. Almost GPs have enabledGPs have functionality online, results records coded detailed view to but only report from 2015. shows Digital NHS from data Latest health information self-diagnose to internet the 75% of the UK population go online for for online go population UK the of 75% from 66% in 2015. in 66% from the internet. the a smartphone own adults UK all of 71%

What types of PHRs are available? types are PHRs of What Fast facts Fast

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What types of PHRs are available? types of PHRs are What

What types of PHRs are available? types are PHRs of What

see your GP’s electronic medical record medical electronic GP’s your see about you. order repeat prescriptions practice GP your at appointments book

1: to do the following things online… online services from their GP practice, which are are which practice, GP their from services online be able should You contract. GP the by required Everyone in England should have access to free, free, to access have should England in Everyone GP records

where live. you together into one place, varies depending on on depending varies place, one into together of your records you can see online, and how how and online, see can you records your of pulled been have information of silos those well People tend to say they’re in ‘silos’. Which parts Which ‘silos’. in they’re say to tend People information have often been kept separately. often been have separately. information kept These fragmented bits and pieces of of pieces and bits fragmented These others will be electronic. on. Some of your records may still be on paper, paper, be on still may records your of Some on. hospital specialists you see, your dentist, dentist, your see, you specialists hospital goes list the psychologist… physiotherapist, Records may be created by your GP, any any GP, your by be created may Records NHS, they make a record of that encounter. encounter. that of a record make they NHS, Each time you visit a health professional in the the in professional a health visit you time Each Your NHS records Your Page 10 Page 1 2 3 4 5 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk started my medication... All the the All medication... my started when I it use can you and there is information in help can which want, you whenever think even not might people situations for applications in filling as such about, care. or benefits insurance, different in consultants several I see I take hospital. nearest my at departments have don’t they so me, with results test my make and letters I download tests. repeat to see should who people the to get they sure same the from singing everyone’s so them, sheet.’ I a doddle. is prescriptions repeat Ordering the to it sends practice the laptop, my use pharmacy andif necessary, the pharmacy non-compliance patient of A lot deliver! will out.’ run they because is meds with 12 independent and not have to keep keep to have not and independent

dates when things happened - when I had I had - when happened things when dates operations, my I had when scan, last my more things? for ask to surgery the bothering whether check to be able to like you Would you so gone, actually letter’s referral your you’ve if appointment your for chase can you Would been for a waiting long time? you so letter, consultant’s your read to like get and it understand you whether see can if needed?’ information more like you ‘Would be asking, also should We you tells doctor your what of a reminder - about your consultations your during it take can you so example, for medication, next?’ happen to going what’s or properly, doctors what 80% of to up forget People almost and consultations during them tell incorrect. is remember they what of half the and problems my all of lists access I can What types of PHRs are available? types of PHRs are What

What types of PHRs are available? types are PHRs of What we should be asking, ‘Would you like to be to like you ‘Would be asking, should we to translate. people, to access record explaining When unexpectedly, I went in with all the info info the all with in I went unexpectedly, helped friend my which records, my from on my mobile phone that enables me to to me enables that phone mobile my on in holiday on I was when Once, this. do hospital into go to I needed and France You can access your GP record 24/7, 24/7, record GP your access can You app an got I’ve world. the in everywhere and see test results for myself. You can do do can You myself. for results test see and all that through your record. stuff. It’s so liberating being able to make make to able being liberating so It’s stuff. appointments, order repeat prescriptions ‘Using my GP records gives me such a such me gives records GP my ‘Using my over control of feeling wonderful Ingrid is a long-term patient and Chair Chair and patient a long-term is Ingrid in Group Participation GP Patient her of Tameside. Ingrid GP to Brindle explains records benefits access online how her

Personal Wiley-Blackwell Health Records: A guide for clinicians. ISBN: Mohammad 978-1-4443-3252-0 Al-Ubaydli, March 2011, 1:

12 Page 11 Page 1 2 3 4 5 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk interpreted, be upsetting or annoying, or might might or annoying, or be upsetting interpreted, anxiety cause and concerns patients’ raise unnecessarily.’ safety, a patient’s protect to necessary seems ‘If it patient’s the from things certain hide can GPs says Phil.view,’ ‘We call this redacting information; deleted from record, the isn’t information the redact GPs it. see can’t patient the that just it’s harm serious cause to likely is that data sensitive workers. healthcare or proxy their patient, the to suspected about entry an include might This about a serious possible or suspicions abuse, the to yet explained been haven’t that diagnosis patient. GPs also redact confidential information another about, is or by, provided been that’s is This privacy. person’s that protect to person, known as third-party data.’ struggle to understand what’s written in their their in written what’s understand to struggle be wrongly might comments some that notes, 13 www.gov.uk/government/publications/using- 14 www.medicalprotection.org/uk/advice-booklets/an-mps-essential-guide-to-medical-records ‘The Advisory endorses Group giving electronic their to access full patients data, including clinician notes.’ Harnessing Work: IT Making Improve to Technology Information Care in England be harmful for people to see some of the the of some see to people for be harmful Phil Dr says record,’ their in information might patients some worry that ‘GPs Koczan. free text, has implications for how we write our our write we how for implications text, has free future the in that considering worth It’s notes. text free make to be encouraged may GPs available to patients.’ recommends Society Protection Medical The patients that assume always should one that stage. some at records clinical their read will Protecting from harm record GP their to access patients ‘Giving might it but benefits, potential many has possible care for patients’ adds Phil.‘Giving patients to access their records, particularly the What types of PHRs are available? types of PHRs are What

What types of PHRs are available? types are PHRs of What

information-technology-to-improve-the-nhs Medical Protection Society. An essential guide Medical to Records. Department of Health. Making IT Work: Harnessing Information Improve Care Technology to in England. Sept 2016

1: 13 14 them go about their job of providing the best best the providing of job their about go them of writing down their own thoughts, to help help to thoughts, own their down writing of ‘GPs have historically used records as a way a way as records used historically have ‘GPs seem possible or they’ve ruled out.’ ruled they’ve or possible seem examinations, and thoughts on diagnoses that as notes that GPs type in on symptoms and and type symptoms on GPs in that notes as during observations make they severity, their considerable amount of information, such such of information, amount considerable with attachments. Free text can include a include text can Free attachments. with they choose to, such as free text and letters letters text and free as such to, choose they ‘GPs can share other things with patients if to the detailed coded data in their records,’ records,’ their in data coded detailed the to London. in a GP Koczan, Phil Dr explains required to give patients free, online access access online free, patients give to required ‘Like all GPs in England, I’m contractually contractually I’m England, in GPs all ‘Like and test results. medications, allergies, illnesses, immunisations data’, which includes information on your your on information includes which data’, electronic medical records. You should be should You records. medical electronic coded ‘detailed your called what’s see to able give patients access to everything in their their in everything to access patients give At the moment, GPs are not required to to required not are GPs moment, the At What can you see in your GP record? your in see you can What Page 12 Page 1 2 3 4 5 6 7 8 9 10 11 Feedback Appendices + Reading

), 16 www.pifonline.org.uk www.pifonline.org.uk 15 NHS records outside of primary care varies. some within departments specialist Some some hospitals offeraccess; patients hospitals the at hospitals Such access. patients all offer online but between, far and few are moment increase. to set is records hospital to access government the England in example, For will people 2018 April by that committed has include that records online to access have care and health their of all from information interactions. of outside use in already are that PHRs created systems bespoke include care primary as such hospitals, individual by in-house portal developed patient (a myhealth@QEHB by University Hospitals Birmingham 10,000 over with Trust, Foundation NHS system the use to registered patients Beyond primary care to access online have people not or Whether as Patients Know Best (a patient portal and portal and patient (a Best Know Patients as over in live that’s exchange information health View Patient 8 countries), across 200 sites and commercially available systems such researchbriefings.parliament.uk/ResearchBriefing/Summary/CBP-7572

www.rcplondon.ac.uk/projects/outputs/personal-health-record-phr-final-report their GP records portal patient Access ‘The Patient that function Record’ My a ‘Share has enables patients to give other healthcare a to view- 24-hour access professionals says record,’ GP their of snapshot only EMIS Tim Health’s East. you’re if example, for help, ‘This can A&E. into go to need you and travelling your on rely to have don’t you means It a new see you time memoryevery they what controls patient The doctor. elements those ticking by share to want a access can Clinicians data. their of a barcode scanning by record patient’s a time- via or phone patient’s the on a full there’s and link, website limited seen what. who’s showing trail audit Giving patients the power to share to power the patients Giving What types of PHRs are available? types of PHRs are What

What types of PHRs are available? types are PHRs of What

House of Commons Library. Briefing paper Number 07572, 25 April 2016 A Housepaperless of Commons Library. NHS: electronic Briefing 25 April2016 paper health Number07572, records. Royal College of Personal Physicians. health record case Myhealth@QEHB (PHR) study. June 2016.

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healthcare provider. PHRs. They provide access to medical medical to access provide They PHRs. a single by you about held is that information Patient portals like this are known as tethered tethered as known are this like portals Patient SystmOnline (from TPP). (from SystmOnline The Waiting Room 2 (from MICROTEST) and and MICROTEST) 2 (from Room Waiting The Patient Access (from EMIS), Vision (from INPS), INPS), (from Vision EMIS), (from Access Patient using. There are four main GP patient portals: portals: patient GP main four are There using. called a ‘patient portal’ to the electronic electronic the portal’ to a ‘patient called already were GPs that systems records medical were created by adding what tends to be to tends what adding by created were The online services that GPs offer to patients patients to offer GPs that services online The Patient portalsPatient - tethered records

16 Page 13 Page 1 2 3 4 5 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk so we release those results after a two-week after results those release we so from worried ‘I’m saying, are Patients delay. doctors whereas done,’ is test the day the the from worried are patients think to tend theday results come in.’ ‘We don’t show all our results online online results our all show don’t ‘We a health Williams, Jim says away,’ straight informatics specialist inBirmingham. ‘We a test if So checking. sense some have have might someone possible it’s shows they’re that or example, for cancer, prostate don’t and back that hold we positive, HIV confirmation got we’ve until online it post outpatient an attended has patient the that appointment.’ that those as such results, test certain ‘For a for ask commonly we ‘Query cancer’, say added is result the before two-week delay Al-Ubaydli, Mohammad Dr says PHR,’ the to ‘If it’s Best. Know Patients of Executive Chief patient the two weeks and than more been their by result the told been hasn’t still dangerous more it’s believe we then doctor, you, from hidden information that have to common sense when looking at test results results test at looking when sense common particularly expecting are you If online. you and concerned you’re or news, difficult to have don’t you worry, might you think support. get you until wait can look. You Patients are not numpties.’ Access to NHS records can enable patients patients enable can records NHS to Access those Sometimes online. results test see to important it’s so be upsetting, might results they what understand patients ensure to see when. and might a consent through go we surgery, our ‘At them giving before people with process Ingrid says records,’ GP their to access questionnaire, in a fill to have ‘You Brindle. to you help that questions has which anticipate things that might happen when consider and records your using you’re do.’ would you what example, for through, think can ‘You during results test at look you’d whether you when a weekend, at or evening the advice or reassurance get can’t you know their use people I think GP. your from Seeing test results online

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What types of PHRs are available? types are PHRs of What

see section 2 1:

and in The Royal College of Physicians’ Physicians’ of College Royal The in and recent information on website each organisation’s patients have access to. You can find more more find can You to. access have patients as does the nature of the information information the of nature the does as The functionality of these PHRs varies, varies, PHRs these of functionality The ( Health. Another example is the eRedbook the is example Another Health. covers 90% of UK renal units, and is being being is and units, renal UK 90% of covers Get Real and too) specialities other in used patients with kidney problems and now now and problems kidney with patients (which began as a portal specifically for for a portal specifically as began (which Page 14 Page 1 2 3 4 5 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk 18 Many are small, family- 17 different technologyITand different systems from organisations 800 care over in care.’ social to trusts acute 2015 UK Tech ‘The health and social care sector in in sector care social and ‘The health of patchwork a complex has England The businesses that provide care in the the in care provide that businesses The be very to tend homes care run or home 5th world’s the is which NHS, the to different largest employer. a very in them puts which businesses, run comes it when NHS the to position different PHRs. for needed technology the procuring to www.techuk.org/insights/reports/item/6224-personal- www.forbes.com/sites/niallmccarthy/2015/06/23/the-worlds-biggest-employers-infographic/#a87e80b51d09 ‘In social care, we’re seeing a different kind kind a different seeing we’re care, social ‘In that to services digital with point starting of ‘The local Richard. continues NHS,’ the in seen this in ahead moved have who authorities transactions on more focusing been have space than on sharing digital records. So people can self- and self-referrals like online things do assessments, to assess their eligibility to financial see to starting also ae We care. with assistance find to people enable that places e-market local their in offered are that services buy and personal their budget.’ using community transactions online these if be great would ‘It and plans care with along PHRs into linked were might people ‘Some Richard. adds things,’ other their in involved people 20 than more have Just family. and friends including even not care, a in place one in details contact those all having offertremendous benefit.’ could PHR What types of PHRs are available? types of PHRs are What

What types of PHRs are available? types are PHRs of What

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1: 18 17 possible quality of life.’ participate in society and have the best best the have and society in participate support people need to live independently, support people independently, need live to prepare breakfast. It’s about the care and morning to get out of bed, get dressed and and dressed get bed, of out get to morning and appointments. For a social worker, it’s it’s worker, a social For appointments. and someone whether about needs the in help Pantlin. ‘For a GP, it’s about medicines medicines about it’s a GP, ‘For Pantlin. to a care plan to a GP,’ explains Richardto a care plan to a GP,’ ‘A care plan to a social worker is very different very different is worker a social to plan care ‘A homes tend to use paper records too.’ too.’ records paper use to tend homes says Lisa Sullivan, a barrister in London. ‘Care ‘Care London. in a barrister Sullivan, Lisa says containing a risk assessment, theircare plan and care notesabout what carers done,’ have should beshould home a folder in the person’s ‘When people have help at home, there there home, at help have ‘When people services. offered access to digital PHRs by social social by PHRs digital to access offered As far as we can tell, people aren’t generally generally aren’t people tell, can we as As far Social care Page 15 Page 1 2 3 4 5 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk health measurement in the hands of anyone anyone of hands the in measurement health a smartphone as such device a got who’s be hugely could This a wearable. or beneficial, particularly ifcombined with pattern- good and records health personal recognition software that can interpret the demonstrates US the from Evidence data. identify to us enable example, for could, this who failure heart congestive with people can we attack, a heart so have to likely are it’s However, medication. rescue them give sort innovation of this get to hard proving into the NHS.’ expertCharles (an Lowe in digital health) ‘Cheap sensors that can monitor our our monitor can that sensors ‘Cheap activity physical our example (for wellness (such signs vital our and patterns) sleep and as our blood pressure, temperature, heart basic putting are rate) respiration and rate devices that are available at the moment moment the at available are that devices any, get you if and other, each to talk all don’t to them connect can’t you find well may you your NHS records.’ ‘Feeding continuous diagnostic data from and you both help could PHR your into sensors decision shared facilitating by clinician your and apps the However, example. for making, People are downloading apps that claim, for your track motivated, stay you help to example, mental health and wellbeing, analyse trends, and recommendations, education and provide achieve you help and best your at you keep to your health and fitness goals. to tested DNA their getting also are People their affect might genetics their how out find problems health certain getting of chances certain to respond might they how and medicines. This could reveal important a PHR. to add to information be could that data generate things these of All functionality. their boost and PHRs into fed and track to people enabling is ‘Technology health own their with do to things monitor before,’ ever than detail more in wellbeing and health of a professor Ainsworth, John Dr says informatics in Manchester. What types of PHRs are available? types of PHRs are What

What types of PHRs are available? types are PHRs of What

1: technology is becoming more sophisticated. more becoming is technology taps have been left running, and smart home home smart and left been running, have taps whether an oven has been left on or bath left been bath or on has oven an whether with dementia, for example, by monitoring monitoring by for example, dementia, with Sensors in the home are helping people people helping are home the in Sensors course, smart phones. scales and blood glucose monitors) and, of and, monitors) scales and blood glucose blood pressure monitors, heart monitors, monitors, blood rate pressure weight oximeters, pulse meters, flow peak wearables, smart devices (such as pedometers, pedometers, as (such devices smart wearables, People are buying fitness trackers and other other and trackers fitness buying are People ways that have never been possible before. before. possible been never have that ways behaviour, fitness, healthbehaviour, and wellbeing in There’s a growing ‘internet of healthy things’, things’, healthy of ‘internet a growing There’s our document and track to us enables which It also has the functionality to connect with with connect to functionality the has also It providers. care social and NHS from data patients, with patients generating the content. the content. generating with patients patients, for example, is designed to be controlled by by be controlled to designed is example, for back in the noughties. Microsoft’s HealthVault, Major technology companies launched PHRs PHRs launched companies technology Major aren’t the only players when it comes to PHRs. to comes it when players only the aren’t Of course, the NHS and social care providers providers care social and NHS the Of course, The consumer world The consumer Page 16 Page 1 2 3 4 5 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk includes information on information includes What types of PHRs are available? types of PHRs are What

What types of PHRs are available? types are PHRs of What of devices. The Royal College of Physicians’ Physicians’ of College Royal The devices. of Landscape Review devices. monitoring to link PHRs which Patients Know Best is another PHR that that PHR another is Best Know Patients a range from data upload to people enables followed by Manchester with 651 patients patients 651 with Manchester by followed patients.’ 582 with Liverpool then and choose to. So far, over 35,000 patients have have patients 35,000 over far, So to. choose the is London way. this PHR their to data sent patients, 4,814 with up take of area highest their GP if they so wish. GPs can then copy copy then can GPs wish. so they if GP their they if record own their to information this from any device that syncs with HealthKit HealthKit syncs with that device any from own patients’ the It’s Access. Patient into with it share to offer can they and data Patient Access, with Apple’s HealthKit. This This HealthKit. Apple’s with Access, Patient seamlessly data feed can patients means as their blood pressure, blood sugar levels levels sugar blood pressure, blood their as Health, EMIS ‘At East. Tim says weight,’ and portal, patient GP our integrated we’ve devices and apps that enable patients to to patients enable that apps and devices such health, own their on information gather Linking apps and devices with NHS records smart of ecosystem a growing ‘There’s

1: Page 17 Page 2 1 3 4 5 6 7 8 9 10 11 Feedback Appendices + Reading

www.pifonline.org.uk www.pifonline.org.uk focused on disease and the majority of of majority the and disease on focused funding streams reflect this.’ Tameside) GP in (a Hannan Dr Amir ‘This not is about being about it’s patients, being people.’ in lead health digital (a Hadley Declan Lancashire) we’re when remember, to important ‘It’s benefit whoPHRs, might from considering merely not is health of definition the that Health World The disease. of absence the of ‘a state as health defines Organisation well- social and mental physical, complete being and not of merely the absence diseaseHealthcare orhas infirmity.’ been treatment. Then you can argue that everyone everyone that argue can you Then treatment. incentive be an to got there’s But PHRs. needs more need we So it. do to want to people for need we and help can PHRs how on evidence it.’ about people tell to ‘I think we need a new model of care that that care of model a new need we ‘Ithink just not and prevention on focus more puts

and 40% of 40% of and 20 www.rcplondon.ac.uk/projects/outputs/personal-health-record-phr-final-report 21 ‘If you think you’re well, it’s not so easy to see to easy so not it’s well, you’re think ‘If you will now health your of ownership taking that Seres. Michael says line,’ the down you help a team. What’s my incentive? Improved self- Improved incentive? my What’s a team. My incentive bettermanagement, awareness? be part and longer for alive myself keep to is The decision. part every of conversation, the of manage I can better the am, I informed more decisions.’ make to I am able better the and a long- with living are people million Fifteen term condition just in England, long- one least at have population Scottish the condition. term a live to keen are who People fit stay and lifestyle, healthy and well role possible the emphasised also People to well are who people helping in PHRs of to be linked can PHRs if particularly well, stay other and trackers fitness apps, motivational smart devices. communicate withcommunicate the healthcare professionals as together work can we so me, support who www.kingsfund.org.uk/time-to-think-differently/trends/disease-and-disability/long-term-conditions-multi-morbidity www.gov.scot/Topics/Health/Services/Long-Term-Conditions

Who might want PHRs? want might Who

The King’s Fund. Long-term conditions and multi-morbidity. multi-morbidity. and conditions Long-term Fund. King’s The Scottish Government. Conditions. Long Term

Royal College of Personal Physicians. health record landscape (PHR) Final report. review. 2016 May Page 18 Page 21 19 20 absolutely want access to my NHS records. I records. NHS my to access want absolutely to them use and them to contribute to want long-term patient and founder of 11Health. ‘I andlong-term founder of 11Health. patient need PHRs the most,’ says Michael Seres, a Seres, Michael says most,’ the PHRs need regular monitoring of their health, who who health, their of monitoring regular multiple, long-term conditions, and need long-term conditions, multiple, ‘It’s probably people like me, who have have who me, like people probably ‘It’s People withPeople conditions long-term benefit from PHRs. benefit from We asked people who they think could could think they who people asked We to use a PHR than those aged 35 and over. and 35 aged those than a PHR use to (aged below 35 years) appear to be less likely likely be less to appear years) 35 below (aged a reduced probability of continuing to use use to continuing of probability a reduced people younger and 6 months; after a PHR health; greater deprivation is associated with with associated is deprivation greater health; their records more than those reporting good treatment; people in poorer health access illness or injury that requires regular medical Review identified that the most frequent a condition, have to tend PHRs of users The Royal College of Physicians’ Landscape Landscape Physicians’ of College Royal The still low. The number of people who are using PHRs is is PHRs using are who people of number The 2: 2 1 3 4 5 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk capabilities offeredbytelecommunication improvements see may we telemedicine, and and management medicines like things in emergency so many hospital perhaps avoid from homes.’ care admissions accommodation sheltered in ‘People living no have to tend villages retirement and moment, the at alarm a personal than more events with hall, a community perhaps and Those together. eating of option the and technical the get could sorts communities of infrastructure to allow telecare, perhaps in sort thing. of this to dedicated that’s a room monitors pressure blood smart like Devices People in residential care homes in residential People and sheltered accommodation, at care have who people and home people benefit could PHRs ‘I believe in residential care homes, sheltered accommodation and retirement villages, and home,’ own their in care need who people a had homes ‘If care Pantlin. Richard says liaise could and resident, each of picture fuller on drawing specialists, and GPs with better daughter will do it. She can give a lot of help.’ of a lot give can She it. do will daughter Dr Mohammad Al-Ubaydli ‘Proxy access to GP records helps family family helps records GP to access ‘Proxy members, otherwise who might feel unsure the provide to best how about uninformed or be it need, may relatives their that support in just knowing that prescriptions are ready, viewing and understanding test results, or referrals.’ or diagnoses check to able being and carer patient, (long-term Elliott Bruce NHS Digital employee) with a man of daughter the ‘Imagine father her loves who example, for dementia, off time take can’t but help to like would and appointments. father’s her of all to go to work daughter the allows PHR father’s her to Access to arrange prescriptions, appointments… The redact) anything that you don’t want your friend friend your want don’t you that anything redact) see. to relative or If you give someone else access to your GP GP your to access else someone give you If (or view from hide to GP your ask can you record,

Who might want PHRs? want might Who

Page 19 Page

and feel more in control of your own health.’ own your of control in more feel and makes it easier to sort things out for yourself yourself for out sort things to easier it makes explains test results to you. This does help. It It help. does This you. to results test explains tell you that you need to drink more. The system system The more. drink to need you that you tell tired. And changes in your creatinine level can example, I’ll look at his haemoglobin and if haemoglobin look I’ll his example, at he’s why understand to us helps that low, that’s says Vicky. ‘If my husband says he’s tired, for for tired, he’s says husband ‘If my Vicky. says blood results and act on them if necessary,’ necessary,’ if act them on and results blood ‘Wherever we are, we can see my husband’s husband’s my see can we are, we ‘Wherever track down a down doctor.’ track on. At least then, you’re not always trying to to trying always not you’re then, least At on. husband’s hospital records. When my husband’s husband’s my When records. hospital husband’s going what’s on eye an keep I can hospital, in really useful for both of us to have access to my my to access have to us of both for useful really Gardner, a long-term carer. ‘We’ve found it’s ‘We’ve a long-term carer. Gardner, has been in hospital quite a lot,’ says Vicky says a lot,’ quite hospital in been has ‘My husband’s got a long-term condition and a got long-term condition husband’s ‘My Dr Koczan. Phil happening and find out how best to help,’ says says help,’ to best how out find and happening for carers and relatives of people with multiple multiple with people of relatives and carers for what’s see can they so conditions, long-term ‘Proxy access to PHRs is potentially very helpful very helpful potentially is PHRs to access ‘Proxy need help Relatives and friends of people who who people of friends and Relatives 2: 2 1 3 4 5 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk week, May 2016 week, May mums. Mums are motivated to care for for care to motivated are Mums mums. their children. And most children are digital good it’s so age, experts a very early from too.’ them involve to Declan Hadley you that recently service a digital ‘I saw the by… over be bowled but help couldn’t books red that little the Book… Red digital How born… is baby their when get parents Red the Keep that. digitalise to wonderful online, inputs those put but identity, Book digital newborns make to help one, day on pioneers, parents information… their give arrowhead an drive to that use and the system, cohortthrough a generational digital a fully got who’ve youngsters of electronic from birth.’ record e-Health UK at speaking Freeman, George ‘A perfect place to start with PHRs is with with is PHRs start with to perfect place ‘A

to relevant videos and information sources sources videos and information relevant to and localfrom information.’ NHS.uk A PHR that’s already being trialled is the the is trialled being already that’s A PHR eRedbook. the of version digital the ‘The is eRedbook Personal Child Health Record, colloquially Dan SiteKit’s says Book,’ Red the as known all to given is ‘The record paper Moulin. health child’s their manage to parents new is It five. of age the and birth between updated by parents and health professionals.’ ‘The eRedbook allows health professionals and parents to enter and share information eRedbook the ‘Both Dan. adds digitally,’ data: same the contain Book Red the and immunisations, weight/height charts, developmental appointments, upcoming the addition In contacts. important and firsts eRedbook practical, contains personalised information for new parents, including links Parents of babies and young young and babies of Parents children 22 Who might want PHRs? want might Who

Who might want PHRs? want might Who Department of Trade and Industry, 2015 2015 Industry, and Trade of Department 14%, and tariff costs by 8%.’ 8%.’ by costs tariff and 14%, elective admissions by 14%, bed days by by bed days 14%, by admissions elective by 15%, emergency admissions by 20%, 20%, by admissions emergency 15%, by reduce mortality rates by 45%, A&E visits visits A&E 45%, by mortality rates reduce ‘The effective delivery of telehealth can can telehealth of delivery ‘The effective www.gov.uk/government/publications/the-uk-your-partner-for-digital-health-solutions Healthcare UK, Department of & Investment. Health and The UK Trade partner UK. Your for healthcare solutions. Jan 2015

Page 20 Page

22 all link in to PHRs.’ to in link all people with dementia. All these things could could things these All dementia. with people to do things like send remote reminders to to reminders remote send like things do to monitoring of other things, and enable us us enable and things, other of monitoring call for help in an emergency. Increasingly Increasingly call for help in an emergency. enable will home the in used devices on their wrist or on a necklace so they can can they so a necklace on or wrist their on alarm systems – an alarm that people wear wear people that alarm – an systems alarm used in the home have traditionally been been traditionally have home the in used homes,’ continues Richard. ‘Again, devices devices ‘Again, Richard. continues homes,’ ‘There’s also a lot of potential to use PHRs to to PHRs use to potential of lot a also ‘There’s own their in carry living on to people help recordings of telecare consultations could be could consultations telecare of recordings added too.’ in could feed data directly into PHRs and and PHRs into directly data feed could 2: 3 1 2 4 5 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk health record, on its own, is a fairly a fairly is own, its on record, health for dataset patients. incomprehensible Understanding it requires a reasonable can however Apps sophistication. of level people suits that a form in data accept can they likewise PHRs; to them write and from data different combine and interpret to users clinical and patient both for PHRs This data. the from benefit the maximise essentially creates a common language betweenbetweenclinicians, different between and health, and care social professionals and patients. Apps are of breaking atherefore down barriers.’ way Charles Lowe ‘When you’re accessing a patient portal a patient accessing ‘Whenyou’re We own. your on you, it’s a patient, as appropriate the all have to patients need support place.’ in Dr Sarah Jefferiesconsultant(a clinical oncologist in Cambridge) which apps, and PHRs of ‘The combination to writing of way a personalised provide start to could records, from reading and electronic A doctor’s be very powerful. www.htmc. , developed with patients and staff, has has staff, and patients with , developed needed.’ Declan Hadley ‘People need to know what the the what know to need ‘People information in their records really means. have and it understand to need They support additional to when access they will cope with everything and manage manage and everything with cope will they everything.’ portal web practice-based ‘Our co.uk learn to patients supporting in essential been they how and available is what about more can understand theirPHR, by signposting the by developed information trusted to and national regional, local, as well as practice Dr says information,’ of sources international Amir Hannan ‘Patients and carers found have to specificthem locally asinformation being from find to hardest often and beneficial most sources.’ alternative care is going to entail, how it will be tailored. be tailored. will it how entail, to going is care how over control more them gives This

Understanding your PHR Understanding your Understanding your PHR your Understanding

Page 21 Page people understand to their properly what ask questions,’ says Shahid. ‘It’s important for for important ‘It’s Shahid. says questions,’ ask information and to forums where people can can people where forums to and information via links in the record to explanatory explanatory to record the in links via a way for them to gain that understanding, understanding, that gain to them for a way ‘If a patient doesn’t know what a full blood blood a full what know doesn’t ‘If a patient be should there example, for means, count

with it, links to further information, ways to to ways information, further to links it, with you.’ confuse that things about more out find in Exeter. ‘There has to be a knowledge base base be a knowledge to ‘There has Exeter. in Muhammad, a long-term patient and scientist a and long-term scientist Muhammad, patient there, what their records mean,’ says Shahid ‘It’s all well and good having access to records, records, to access having good and well all ‘It’s but people need understand to what’s ‘erythrocytes’ or ‘red blood cells’, a ‘prognosis’ a ‘prognosis’ cells’, blood ‘red or ‘erythrocytes’ future’? the for ‘outlook an or have a ‘femur’ or a ‘thigh bone’, for example, example, for bone’, a ‘thigh or a ‘femur’ have aren’t part of everyday language. Do you Do you language. part everyday of aren’t conditions and even parts of the body that body that parts the of even and conditions names for diagnostic tests, symptoms, symptoms, tests, diagnostic for names The medical world is full of jargon that you you that jargon of full is world medical The won’t findin a standardEnglish dictionary – important it is that people can understand understand can people that is it important meaning. has record their – that PHR their Many people we spoke to emphasised how how emphasised to spoke we people Many 3: 3 1 2 4 5 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk Understanding your PHR Understanding your

Understanding your PHR your Understanding

as peer support groups and charities.’ and groups support peer as Declan Hadley them, and on groups that might be able to help, such such help, to be able might that groups on and them, healthy, on health problems and how to cope with with cope to how and problems health on healthy, from PHRs – information on lifestyle and staying staying and lifestyle on – information PHRs from ‘You could signpost to all sorts of useful information information sorts useful of all to signpost could ‘You Shahid Muhammad condition.’ the provision of all of the information that people people that information the of all of provision the a long-term with life with on get them help to need we integrate into the care pathway more robustly robustly more pathway care the into integrate we ‘PHRs present an opportunity to reconsider how how reconsider to opportunity an present ‘PHRs

Page 22 Page own personal library of useful information. useful of library personal own they find particularly helpful, so they can build their their build can they so helpful, particularly find they Some PHRs also allow people, and their health and care care and health their and people, allow also PHRs Some that information to links own their add to professionals,

sources of information that are available online. Some Some online. available are that information of sources already. that do PHRs ready-made links in PHRs to high-quality, trusted trusted high-quality, to PHRs in links ready-made An obvious way to build understanding is to include include to is understanding build to way obvious An Linking PHRs to online healthinformation 3: 3 1 2 4 5 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk about what they want to find out and and out find to want they what about to thing a good necessarily isn’t It when. bombard everyone comprehensive with be to need We go. one in all information providing the right information at the help can portals patient and time right that.’ do to us an to coming portal is this of pilot The Research Cancer 2016. December in end existing with work to continuing is UK providing of a way as portal providers supporting information and resources to patients. They workingcancer also are open an develop to NCRAS the with standard application program interface securely link to PHR trusted any for (API) access to users its enable and NCRAS to their NCRAS records. be able to look up a term easily. a term up look to be able feel to patients portal enables the I think decisions informed making are they like 86% of patients who provided feedback feedback provided who patients of 86% others. to PHR the recommend they’d said them gave access having that said Patients be to good was it that security, of a feeling in information process and access to able that and pace, own their at time own their ask to questions of think to them helped it their doctors. survey life of quality the using liked Patients the and time over wellbeing their track to information the take could they fact that nurse. their with consultations to along to be useful would it thought Patients informationhave integrated with the information more for example, records, and glossary, the type tumour, of their on lots across come They resources. targeted to wanted they so information technical of Understanding your PHR Understanding your

questionnaire – which people can use to to use can people – which questionnaire monitor their wellbeing. There’s space for people to add contact contact add to people for space There’s There’s notes. own their and details – a tool tracking life of a quality also information on cancer on the Brainstrust Brainstrust the on cancer on information and Cancer Research UK websites. comprehensive supporting information, supporting information, comprehensive to links helpful and a glossary including results, summaries of imaging reports, when, and had they’ve surgery what included We treatments. other their and People can use the portal to see their their see portal to the use can People tumour records, including their test been piloting a patient portal for people people portal for a patient piloting been with cancer. ‘Public Health National England’s Cancer (NCRAS), Service Analysis and Registration have UK Research Cancer and Brainstrust Laura is a project officer at Cancer Cancer at officer a project is Laura Research UK. Laura Smith on a patient portal for people with cancer with portal people for patient a on Smith Laura Understanding your PHR your Understanding

Page 23 Page 3: 3 1 2 4 5 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk before the doctor has reviewed them. reviewed has doctor the before that’s information about it’s ‘Secondly, about patients systems,’ to those given the what be told should ‘Patients Lisa. adds they not or whether example, for is, system doctor.’ the before results test see can ‘It’s all about managing the relationship and doctor the of expectations the and ‘The systems Lisa. continues patient,’ patients and understand, to be easy should beshould about told them. Everything should be transparent.’ Defining systems andcommunicating them to patients the understand to able being as As well be also should people PHRs, of content expect them. to of what understand to able Sullivan. Lisa says two things,’ about ‘This is ways meaning systems, about it’s ‘Firstly, in systems put to need Doctors working. of example, for clearly, them define and place results test see can patients whether ‘We’re still in the process of working out out working of process the in still ‘We’re most are information of elements what large down distil we can How valuable. meaningful it make and data of amounts forpeople different anddifferent real the where That’s professionals? challenge lies.’ Richard Pantlin does my doctor care?’ asks Michael Seres. Seres. Michael asks care?’ doctor my does at drop suddenly day per steps my if But ‘No. then worse, gets health my as time same the create could We be important. might that systems the that so data around intelligence What signs. warning up flag can themselves healthcare the what and data with do we as important as just is does professional place.’ first the in access having ‘If my 10,000 steps per day sits in my record, record, my in sits day per steps 10,000 ‘If my in diabetes consultant

Understanding your PHR Understanding your

Understanding your PHR your Understanding

Page 24 Page on what they need to do.’ do.’ to need they what on unless there’s an automatic alert that prompts prompts alert that automatic an there’s unless instructions clear with something, do to them might prefer not to look at any of the data data the of any at look to not prefer might done compared with my friends. Other people people Other friends. my with compared done competitive aspect of how many steps I’ve I’ve steps many how of aspect competitive and endocrinology in Sandwell. ‘For example, example, ‘For and endocrinology Sandwell. in the in be interested I might steps, Fitbit for says Dr Pete Davies a Davies Pete Dr says use of it, for example when making decisions,’ decisions,’ making when example for it, of use patients and clinicians – and so they can make make can they so – and clinicians and patients is fed back to people and presented so it suits suits it so presented and people to back fed is including – people different of needs the devices, and customise how that information information that how customise and devices, sense of all of the data streams from apps and and apps from streams data the of all of sense ‘We need better tools that enable us to make make to us enable that tools better need ‘We share it and act on it are yet to be determined. be determined. to yet are act it on and it share display this information in a meaningful way, way, a meaningful in information this display into PHRs. It may well be that the best ways to to ways best the be that well may It PHRs. into automatically generate a continuous stream of of stream a continuous generate automatically be fed all could which data, of quantities vast trackers and blood pressure monitors can monitors and bloodtrackers pressure Sensors in smart devices such as fitness fitness as such devices smart in Sensors Making of sense sensors 3: 4 1 2 3 5 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk which could cause harm.’ Dr Amir Hannan ‘Email is not the same as secure secure as same the not is ‘Email a into log patients where messaging, that a message send and website secure log also who others by be seen only can in, and who a legitimate have relationship audit a full include and patient, the with trail. Emails are not in the mainsecure, not others. by be viewed can and encrypted be should consent explicit Appropriate are there as sent is email before sought significant risksassociated with email

works best for them?’ group out send to ability the like also ‘We’d patients, to surveys send can we so messages targeted out send and them from learn Pete. adds information,’ of PHRs,’ says Dr Pete Davies. ‘I’m strongly strongly ‘I’m Davies. Pete Dr says PHRs,’ of their to access patients giving of favour in about mostly thinking was I first at and records quickly it But transparency. and openness just than more want people that clear became to want They transact. to want They access. book appointments, order repeat prescriptions, communicate to messaging secure use and care.’ their about trust they people with so is PHR our in function ‘The messaging in getting, of a way people giving powerful… can who person right the to manner, a timely ‘Messaging Pete. says questions,’ their answer well as decisions, small with people helps nuances those and ones, big obvious the as caring works who As a doctor help. really can isn’t for people long-term conditions, with answer to Trying about? all it’s what that find they that a way in question somebody’s Secure messaging element a crucial is messaging secure ‘I think Communicating with people can who help you Communicating

Communicating with peoplewith can who you help Communicating

e-Health Week in May 2016 May in e-Health Week Lord Victor Adebowale, speaking at UK UK at speaking Adebowale, Victor Lord those who need that the most.’ relationships that especially matter, for in sophisticated tech, it’s in the ability to to ability the in it’s tech, sophisticated in and communities and produce provide can talk to patient… The challenge isn’t isn’t challenge The patient… to talk can can talk to administrator, administratorcan talk to administrator, patient, doctor can talk to doctor, doctor doctor doctor, patient, can to talk is not good… Tech should create an an create should Tech good… not is to talk can doctor where environment it. Tech that removes theit. relationship Tech and connectivity, not a substitute for for a not substitute and connectivity, be a tool for engagement, relationships be a tool for relationships engagement, ‘The point of e-health is that it should should it that is e-health of ‘The point

Page 25 Page the same sorts of things as you. as sorts things same of the others, such as people as others, such who experiencing are These tools may enable you to communicate communicate to you enable may tools These with or team, care and health your with which the people we spoke to value greatly. greatly. value to spoke we people the which Some PHRs contain communication tools, tools, communication contain PHRs Some 4: 4 1 2 3 5 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk How do I interact with my healthcare, healthcare, my with I interact do How records patient my with I interact do how Skype! A few and What’sApp Via now? back go to I had example, for weeks ago, a had I’ve review. a full for clinic the to Oxford in doctor my and transplant bowel whether borderline was there sure wasn’t neededrejection. We a opinion, second the and India in Skyped doctors we so in bed hospital my from this all did We US. what discussed everyone together and The do. should we what and happen might part and it’s and recorded was Skype call parcel of record.’ my jotting down that relationship. Michael Seres on relationships and technology and relationships on Seres Michael who doctor a new I saw 16, ‘When I was effect a profound had that something said my I manage how of kind it’s and me, on ‘Michael, said, doctor My point. this to life you if you treat only I will deal: the is this health your for responsibility much as take your about you teach to going I’m I do. as what me teach to going You’re condition. are we And shoes. your be in to like it’s a team.’ as together work to going a about just fundamentally is Healthcare relationship– a relationship based around mutual respect, mutual trust, mutual Healthcare recordsempathy. are about meaningful relationships between patients and professionals.’ Davies Dr Pete ‘We’ve found that using PHRs enables us to build closer and more more and closer build to us enables PHRs using that found ‘We’ve Communicating with people can who help you Communicating

Communicating with people with can who you help Communicating

Page 26 Page there in the record.’ quite rapidly, because the information is all all is information the because rapidly, quite people calling about results, has gone down down gone has results, about calling people We’ve got 12,500 users on the system and and system the on users 12,500 got We’ve as such communications, of volume the actually seen the complete opposite of that. that. of opposite complete the seen actually receiving lots of emails from them. We’ve We’ve them. from emails of lots receiving number of communications from people… from people… of communications number worried well and getting an overwhelming overwhelming an getting and well worried to their clinicians,’ says Jim Williams. ‘At first, first, ‘At Williams. Jim says clinicians,’ their to of influx an about worried were clinicians myhealth@QEHB – to send secure messages ‘Patients can use our patient portal – patient our use can ‘Patients Messaging and workload 4: 4 1 2 3 5 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk ‘Lots of patients would love to connect connect to love would patients of ‘Lots only You them. like people other with Patients of success the at look to need we if be great it Wouldn’t Me. Like they so PHRs via people connect could can learn from each other and share own their experiencesof managing very are an much Patients condition? untapped resource.’ Davies Dr Pete in myhealth@QEHB,’ says Jim Williams. ‘You ‘You Williams. Jim says myhealth@QEHB,’ in the with people find to PHR your use can own your create and you as condition same give who patients fellow networks of support can Patients friendship. or advice help, you about start journals other, each with converse their health, publish information to their news patients’ other network, view support feeds and more.’ Forums and peer support peer and Forums network a support include to wanted ‘We

Communicating with people can who help you Communicating

Communicating with people with can who you help Communicating

Page 27 Page understanding.’ and waiting in your PHR could help improve improve help could PHR your in waiting and be recorded and uploaded onto your PHR.be your and uploaded recorded onto ready a transcript, or recording, the Having messaging, all of that information could could information that of all messaging, or talking with a camera or using instant instant using or a camera with talking or daily lives. With Skype, WhatsApp, if texting texting if Skype, WhatsApp, With lives. daily communication such as Skype and cut down down Skype cut as and such communication busy of out time work, of out time time, travel to if they could use alternative forms of of forms alternative use could they if to face-to-face, but others might choose not not choose might others but face-to-face, ‘Some people like to see their consultant their see to like people ‘Some GP surgery can take them.’ take can surgery GP specialist to do the bloods. The nurse at my my at nurse The bloods. the do to specialist But I don’t need to travel all the way to my my to way the all travel to need I don’t But Shahid Muhammad. ‘The only real reason bloods. the do to is a clinic to go to me for consultants are 4-6 months apart,’ says ‘My appointments with my specialist specialist my with appointments ‘My Opportunities for teleconsultations 4: 4 1 2 3 5 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk

‘Doctors if a changes patient make should Sullivan. Lisa says a mistake,’ out points the what with disagrees doctor ‘If the the if example for saying, is patient said was what of recollection doctor’s tothe different is a consultation during then the doctor patient’s, that note should to ability The record. the in disagreement thing a good is mistakes correct and spot is treatment patient mean could It all. for patients With harm. avoid to as so changed who are regularly reviewing their notes, it what over arise disputes fewer mean could that meaning a consultation, in happened fewer claims are brought and doctors are often.’ less found negligent Communicating with people can who help you Communicating

Communicating with people with can who you help Communicating corrected it. That’s really powerful. That’s That’s powerful. really That’s it. corrected co-production.’ get we into how a mistake, so there was a mistake in in a mistake was there so a mistake, ‘The Davies. Pete Dr says record,’ the I and out, it pointed this, spotted patient ‘On one occasion, the speech and voice voice and speech the occasion, one ‘On made had I use system recognition information since the 1990s so the only only the so 1990s the since information access.’ of method the is change found a mistake and to know it’s going going it’s know to and a mistake found right the had have We with. be dealt to medical personal our of any see to law in mistake. We’ve found that people are just just are people that found We’ve mistake. they’ve say to chance the have to glad experience. And it’s best to find mistakes. mistakes. find to best it’s And experience. their over all jump to going aren’t People a found they’ve because just doctor mistakes in records and shout,’ says Ingrid Ingrid says shout,’ and records in mistakes our in happened ‘That hasn’t Brindle. Eliminating mistakes in records for look will people that a concern ‘There’s

Page 28 Page 4: 5 1 2 3 4 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk outcomes people get than simply looking at at looking simply than get people outcomes record The category. a disease or result a test time over but information this contains rarely a clinician working with the patient builds and care of Continuity knowledge. this up devices, to contribute information. contribute to devices, healthcare give to a way have to ‘I want information my to access professionals me about know them lets that a way in says Shahidproperly,’ Muhammad. ‘I’ve had I worry and time, long a for problems renal I want life. in things other and work about where be somewhere to information that all know can they so it, see can professionals my concerns, - my life whole my is this that we Then goals. and ambitions my difficulties, improve, to what of aspects all up weigh can not just the clinical.’ somebody to talk to want carers and ‘Patients a family within a person as them knows who and says a Dr community,’ Amir Hannan. much are health of determinants ‘The social more important in understanding what Patients contributing information contributing Patients and apps their and patients, allow PHRs Some

hospital, you typically have to give them them give to have typically you hospital, over all you about information the all time each that do to have You again. a new see to place a new to referred you’re doctor. Things are starting to change, but traditionally actively we haven’t shared information about you across the healthcare more know supermarkets Most system. do!’ doctors your than you about Declan Hadley story, your tell to have you ‘The times more being.’ a human like feel you less the UK at speaking Adebowale, Victor Lord 2016 e-Health week, May ‘When you go to see a new doctor in in doctor a new see to go ‘Whenyou A more complete picture of you complete A more

A more complete picture you of complete A more

5: Page 29 Page

professionals create about you. information yourself and the ability to join up up join to ability the and yourself information care and health different that records the of all Key things here include the option to add add to option the include here things Key this may lead to greater continuity of care. care. of continuity greater to lead may this own health, needs and preferences, and that that and preferences, and needs health, own comprehensive set of information on your on your set of information comprehensive the ideal PHR would provide an opportunity opportunity an provide would PHR ideal the a place one in together gather to you for Lots of the people we talked to suggested that that suggested to talked we people the of Lots 5 1 2 3 4 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk care varies,’ says Declan Hadley. North West in Exchange Information ‘The Care what of scope and scale the shows London Dr Best’s Know Patients says achieve,’ can you a population give to aims ‘It Humphreys. Lloyd PHRs that bring together into one place all all place one into together bring that PHRs of the records that different health and care an is this but them, about create professionals and patients benefit could that goal important professionals alike. a starting very much is records GP to ‘Access providing care, social and NHS the in point setting,’ care a single from records to access starting the only is this ‘But Koczan. Phil Dr says patients at looking also are People point. brought that’s data of set a wider accessing together from multiple care settings.’ the UK,‘Across there are several large-scale record-sharing programmes, for example in Leeds, Bristol, Hampshire and North West patient feature all don’t they although London, they which to extent the and yet access integrate information from health and social Joining up records - eliminating silos access to people most for yet possible not It’s spending our valuable time together device.’ a off info the getting using apps ‘We’ve started recommending a glucose a few which ‘Diasend’, called tool tracking trying are patients out. people uploadIt allows information to from glucose meters,insulin pumps, and mobile monitors glucose continuous the into information that all puts It apps. and app an in phone your onto and cloud information their share to patients allows with their doctor. for wait to had we Diasend, using Before attend to patients appointment, their download and device their for ask then information from it in the consulting that access can we Now room. That patients. see we before information a more It’s consultation. the with helps than information use to way meaningful Dr Pete Davies on sharing information information sharing on Davies Dr Pete A more complete picture of you complete A more

A more complete picture of you complete A more

5: Page 30 Page

and how it is effecting you than your doctor.’ your than you effecting is it how and you might know more about your condition condition your about more know might you consumer. It will be more about stuff you can can you stuff about be more will It consumer. mean might it and Boots, and World PC in buy wellbeing. This is becoming more about the the about more becoming is This wellbeing. in the house that monitor your health and and health your monitor that house the in ‘There are devices, things you wear and things things and wear you things devices, ‘There are for your PHR yourself, says Declan Hadley. Hadley. Declan says yourself, PHR your for ‘With gadgets and more more becoming data the of most be collecting you’ll available,

carer and clinician is fundamental, and not just just not and fundamental, is clinician and carer data.’ our than more are We PHR. the to access enhancing the relationship between the relationship patient, enhancing 5 1 2 3 4 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk ‘Rally Round Me’ gives you some idea idea some you gives Me’ Round ‘Rally of the possible benefits ofconnecting about It’s tools. digital using people so you, around a community creating grass the cut example, for can, people a as You hospital. in you’re if you for to data your of bits share can citizen you.’ help to people coordinate help Declan Hadley www.parliament.uk/business/committees/committees-a-z/ communities are far more digitally connected. different together bring may we future, the ‘In the ‘At Davies. Pete Dr says PHRs,’ via sectors level a different at is sector each moment, have day one may we but development, of of a form with communities, connected information exchange between, for example, GPs, hospitals, ambulance services, pharmacies, good.’ of lot awful an do could This care… social health that things of loads ‘There are have don’t they because give, can’t professionals change,’ to unlikely that’s and time, enough ways find to need ‘We Muhammad. Shahid says staff. NHS front-line on pressures the reduce to partnership in work to need a growing is There across communities to increase awareness of an play can media social and PHRs services. local important role in this.’ Connected communities where part a future of be a key also could PHRs 23

A more complete picture of you complete A more

April 2016 George Freeman, House of Commons, Commons, of House Freeman, George what the treatment is.’ hospital to know who they are, why they they why are, they who know to hospital and for was referral the what there, are being referred by a GP, they want the the want they a GP, by referred being ‘When somebody arrives at hospital after after hospital at arrives ‘When somebody Laura Smith information in one place.’ systems. People need to have all of their their of all have to need People systems. of different logins for logins ofa different rangeof different hospitals, makes it very difficult to manage manage to very difficult it makes hospitals, lots have to want don’t You a patient. as for example with your GP and different different and GP your with example for ‘Having all your records in different silos, silos, different in records your all ‘Having Commons Select Committee. Debate on the use of digital patient April records 2016 in the NHS. 21 commons-select/backbench-business-committee/news-parliament-2015/debate-on-the-use-of-digital-patient-records-in-the-nhs

5: Page 31 Page 23 services, community services, and others.’ together information from CCGs, social care, care, social CCGs, from information together health mental care, acute provide that trusts of 2.3 million people access to PHRs that bring bring that PHRs to access people 2.3of million 5 1 2 3 4 6 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk , which is controlled controlled is , which ‘untethered PHR’ ‘untethered by the individual rather than an institution. provided are PHRs untethered Typically, a web-basedthrough platform offers which data keep to space online an patient the generated data - including health their about synchronises - and themselves patient the by with the patient’s electronic health records held by differentinstitutions. Thisrequires the patient and the healthcare institutions’ interoperability and relevant permission place. be in to protocols The Patients Know Best PHR is an example example an is PHR Best Know Patients The an of copies of the information they create to to create they information the of copies only Not place. one in hold to patient the it’s but morally, do to thing right the that is portability data full enable we if scalable across every institution’s medical records a single with up ends patient Each system. and health of all across record digital social care.’ health, general into record the divide ‘We but information, the of majority the for also sexual health, mental health and social care. That granularity reduces the patients what problems surrounding it’s because share, to want don’t and do the sharing drives that consent patients’ and patients so information, the of can together.’ work professionals A more complete picture of you complete A more

A more complete picture of you complete A more health or care professionals should all give ‘At Patients Know Best, we suggest the PHR PHR the suggest we Best, Know Patients ‘At that and patient, the on be centred should often, everyone is allowed access to that that to access allowed is everyone often, patient. the except record care integrated for an is afterthought.’ patients Access that pays the biggest price for fragmented fragmented for price biggest the pays that too all But government. the is care integrated – they want an integrated digital digital integrated an want – they integrated patient, each for record care and health party the patient, the apart from because ‘What we’re seeing now is that governments governments that is now seeing we’re ‘What be to data want world the over all fragmentation. It’s an approach that does does that approach an It’s fragmentation. not scale.’ This locks the patient to that institution, institution, that to patient locks the This rather than locking the institution to the patient, and replicates institution-based institution’s own electronic record system, system, record electronic own institution’s on. going what’s see patient the lets which Dr Mohammad Al-Ubaydli on the approach of Patients Know Best Know Patients of approach the on Al-Ubaydli Dr Mohammad an to layer a viewing add portals ‘Patient

5: Page 32 Page 6 1 2 3 4 5 7 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk , which were put out for public public for out put were , which

24 new data security standards the with compliance testing of a method new standards data for model consent/opt-out a new sharing in health and social care, to enable decision informed an make to patients be shared. will data their how about

legal duty to safeguard the confidentiality of confidentiality the safeguard duty to legal hold they about and patients their information before must seek sharing consent patients’ and Laws exceptions). some (with data their regulations that already safeguard health records include the Data Protection Act, the Constitution NHS the Act, Rights Human and theNHS Care Records Guarantee (see Appendix 3). Data National the Caldicott, Fiona Dame Guardian for health and social care, has made proposals Existing andproposed safeguards Healthcare professionals an ethical have and consultation in July 2016, on: 2016, July in consultation

‘Getting consent to share records from the the from records share to consent ‘Getting over control patients giving – and patient bits which and records their seeing who’s critical. absolutely – is sees person each issue, big another is management Identity security.’ is as Koczan Dr Phil for accuracy, ensure nothing is missing or or missing is nothing ensure accuracy, for viewed last they when and added mistakenly a position be in then should They record. their information see to others for consent to pertaining them. confidence to This builds to helps privacy, safeguards It trust. and maintain security and enables appropriate sharing of records.’ appropriate consent carers) should be should able carers) consent appropriate check them, about recorded is what see to Privacy, security and consent to share to security and consent Privacy,

Privacy, security and consent to share to security consent and Privacy,

Department Written of Health. statement George Parliament. to Review Freeman MP. of health and care data security and consent. July 2016. www.gov.uk/government/speeches/review-of-health-and-care-data-security-and-consent

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no longer appropriate, may not be not safe and may no longer appropriate, with (and experience. not Patients is a great patient or carer has not seen it themselves, is is themselves, it seen not has carer or patient a clinician can see their record, when the the when record, their see can a clinician be any different? Simply asking ifSimply a patient different? be any Why should access to your personal record record personal your to access should Why information is shared. where consent is gained before personal personal before gained is consent where true if I am about to examine a patient, do do a patient, examine to about I am if true a hospital, to patients refer or test, a blood and decide together what we will do. This is is This do. will we what together decide and engage patients and carers in a conversation andengage carers patients in a conversation options in a meaningful way. We have to to have We way. a meaningful in options requires us to explain what we are doing different of cons and pros the and why, and consent (except in a few very rare cases). This This cases). very rare a few in (except consent anything to a patient without getting explicit explicit getting without a patient to anything Amir a Hannan. clinician, we cannot ‘As do shared, how, with whom and why,’ says Dr Dr says why,’ and whom with how, shared, ‘Having a PHR raises issues about what is is what about issues raises a PHR ‘Having everyone’s minds. security and patients’ ability to control who who control to ability patients’ and security of top are PHRs in information use and see can Unsurprisingly, issues surrounding privacy, privacy, surrounding issues Unsurprisingly, 6 1 2 3 4 5 7 8 9 10 11 Feedback Appendices + Reading 27 www.pifonline.org.uk www.pifonline.org.uk is the term used used term the is 26 ‘Data is the new oil.’ e-Health UK Adebowale, Victor Lord 2016 week, May decommissioning as well as requirements and standards organisations and their the fulfil to achieve to need suppliers handled is information that obligations effectively and efficiently, securely, legally, trust.’ public maintains which a manner in ‘Information governance’ ensure to used processes the to refer to collected, is managed, personal information and a secure in used and transmitted confidential way. TheNational Data Guardian defines ‘how as governance information organisations manage the way information health the within handled are data and It England. in system care social and and access use, collection, the covers

The 25

and help consumers make informed choices. informed make consumers help and security issues when using apps and devices devices and apps using when issues security available commercially too. people enable wideand devices range of apps ‘A Ainsworth. John Dr says data,’ health collect to these provide that organisations the of ‘Some part their of as collection data see products same the in data see They model. business to no requirement There’s Facebook. as way in visible highly handling data on policy make be buried could It conditions. and terms the print.’ small the all in somewhere - a PHRs for Notice Privacy a Model US, the In been - has resource available openly voluntary, convey clearly help developers to designed about privacy their information andsecurity products. their of users to policies being currently is which Notice, Privacy Model updated, is designed to encourage transparency Data as a commodity as Data and privacy of be aware to important It’s www.healthit.gov/policy-researchers-implementers/model-privacy-notice-mpn

www.rpharms.com/pressreleases/pr_show.asp?id=3952 Privacy, security and consent to share to security and consent Privacy,

Privacy, security and consent to share to security consent and Privacy,

Jim Williams these hackers.’ these this is monitored on a 24-hour basis by by basis a 24-hour on monitored is this ethical hackers to test our security and and security our test to hackers ethical else, including their bank details. use We people care more about the security of of security the about more care people their health records than almost anything defend against cyberattacks. Many cyberattacks. Many against defend intruders from gaining access and to to and access gaining from intruders tight as possible to prevent unauthorised unauthorised prevent to possible as tight ‘We have to keep the security of PHRs as as PHRs of security the keep to have ‘We HealthIT.gov ModelHealthIT.gov Privacy Notice (MPN) March 2016 March 2016 National Data The Guardian. Share or Not Information Share? to Information: Governance To Review www.gov.uk/government/publications/the-information-governance-review Royal Pharmaceutical Society. Electronic Health Records: Guidance for Community Pharmacists and Pharmacy Technicians

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27 26 25 7 1 2 3 4 5 6 8 9 10 11 Feedback Appendices + Reading

www.pifonline.org.uk www.pifonline.org.uk 28 29 ‘With 60 to 70 per cent of premature premature of cent per 70 ‘With 60 to deaths caused by detrimental health engage people that vital is it behaviours, more with improving their own health… - lives everyday their in do people What exercise they much how eat, they what - advice medical follow they far how and their and health their determines largely need for health care.’ 2014 Fund, King’s The ‘The average person with diabetes spends spends diabetes with person ‘The average a health with face-to-face a year 6 hours they that decisions the is It professional. will that hours 8,754 other the in make their of length and quality the determine make to them helping by Only lives. them supporting by and choices, good really we can decisions, those making in improve their outcomes.’ Self Care Forum www.kingsfund.org.uk/publications/supporting-people-manage-their-health www.selfcareforum.org/getting-started/how-to-guide their own health and wellbeing – that PHRs PHRs – that wellbeing and health own their or self- self-management, help promote may care, and relieve growing pressures on NHS and social care services. ‘Let’s think about something simple, like recording weight,’ says Dr Mohammad Al- round a nurse send to have ‘Ifyou Ubaydli. visit a single that, do to home someone’s to than system the to expensive be more might so scale a digital with someone providing data the feed and themselves it do can they into their PHR.’ that evidence compelling of a lot ‘There’s patients who are active participants in their outcomes,’ better have care and health own adds Shahid Muhammad. Many of the people we spoke to said they they said to spoke we people the of Many after look to people help could PHRs thought

Doing more for ourselves for Doing more

Doing more for ourselves for more Doing

Dr Richard Fitton (a retired GP) retired (a Fitton Dr Richard encouragement to do to better!’encouragement and need assistance, tools, training and and training tools, assistance, need and Management Service. Citizens are the biggest creators of health and ill health much as a National Disease and Death Death and Disease a National as much don’t have a National Health Service so so Service Health a National have don’t in a bottle from the GP or hospital. We We hospital. or GP the from a bottle in home and in your life. It is not available available not is It life. your in and home friends, relatives, relationships achieve from away work, home, at together ‘80% of health is what you and your your and you what is health of ‘80% Dr Amir Hannan vibrant and sustainable.’ supported by healthcare, it becomes counts. When this is community led and and led community is this When counts. written in papers or policy documents documents policy or papers in written which do people what is It strategies. or Not what is discussed in conferences or or conferences in discussed is what Not they hear. Not what others are doing. doing. are others what Not hear. they they say. Not what they see. Not what what Not see. they what Not say. they ‘Health is what people do. Not what what Not do. people what is ‘Health The Supporting King’s Fund. people manage to their health. An introduction patient to activation. 2014 May How Implement to a Self Care Approach Aware Demand to Management. A Guide from the Self Care Forum

7: Page 35 Page 29 28 7 1 2 3 4 5 6 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk for some routine monitoring, for example monitoring, for some routine weight, their and pressure blood their of feeding symptoms, own their assess and all the information into their Personal tailored They receive Record. Health self- with them help sheets, which advice decide to them help and management what and hospital to go to need they when The visit. another avoid to do could they are patients if nurses notifies also system having from patients saves It low. scoring check- routine for hospital into come to up, flare symptoms if that, means and ups 48 hours.’ within be seen can patients Example 2: Helping people with with people Helping 2: Example direct to disease bowel inflammatory their own care ‘Experience and Dunstable Luton at people help can PHRs shows Hospital disease bowel inflammatory stable with the from condition their manage to Lloyd Dr says home,’ own their of comfort expected is ‘This approach Humphreys. outpatient of number the reduce to appointments. Patients take responsibility PHRs is improving diagnosis of epilepsy parents invited Peterborough in ‘Doctors home at children their of videos take to to video the upload and seizures during Al-Ubaydli. Mohammad Dr says PHR,’ their the that discovered team ‘The clinical in see they information the of quality see they what than higher is videos those two days for hospital into go children if This for madefor it monitoring. easier children the not or whether tell to doctors improved it did, they if and, epilepsy had children’s the treat to ability doctor’s the meant and bed days, saved It epilepsy. to go to have didn’t children and parents experience.’ patient so improving hospital, Example 1: Uploading home videos to to videos home Uploading 1: Example Doing more for ourselves for Doing more

Doing more for ourselves for more Doing

7: Page 36 Page describe two approaches that people told us us told people that two approaches describe successful. proved already have that about based thinking at the moment, but here we we here but moment, the at thinking based This may be more speculative than evidence- than speculative be more may This research? research? for us to volunteer to take part in medical medical part in take to volunteer to us for us to get into good habits, or make it easier easier it make or habits, good into get to us us to live as healthily as we can, analysing data data analysing can, we as healthily as live to us helps actually what out work to record the in Perhaps they could also prompt and support support and prompt also could they Perhaps professionals? professionals? some of the pressures on health and care care and health on pressures the of some have traditionallyhave done, thereby relieving do some of the things that professionals professionals that things the of some do Perhaps they could make it easier for us to to us for easier it make could they Perhaps knowledge, skills, motivation and confidence and confidence motivation knowledge, skills, better? ourselves after look to need we Perhaps PHRs can help us to build the the build to us help can PHRs Perhaps 7 1 2 3 4 5 6 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk 32 ‘Let’s see how you get on,’ then people can can people then on,’ get you how see ‘Let’s can you and less a bit eat can You respond. best The works. all it and weight your reduce health a personal have to is that do to way and care record at the centre.’ Charles Lowe solutions are also providing a means a means providing also are solutions identifyto is whose patients condition and where early intervention deteriorating is admission a hospital that mean could of Department US the example, For avoided. has programme telehealth Affairs’ Veterans its of a result as utilisation resource reduced monitoring condition to proactive approach for 55% over to 20% from ranging home, at conditions.’ some chronic 2016 Trust Nuffield if appropriately Records, Health ‘Personal self- make help could apps, by accessible micro- people give to got You’ve work. care got you’ve you tells doctor your If goals. may you body weight, your of 30% lose to a programme, up set you If up. give just well say week, and per goal a weight-loss with ‘Telehealth and other self-monitoring self-monitoring and other ‘Telehealth

People can become more physically can becomePeople physically more and weight a little lose better, eat active, use. alcohol and tobacco reduce Programs that feature goal-setting, modes of and multiple self-monitoring messages tailored with communication programs are as effective, be more to tend that include some interactions with healthcare providers. The researchers reviewed studies, 224 generallyinvolving adults, healthy Most 2013. and 1990 between published months, six than less lasted studies the of carry people on whether unclear it’s so longer the term. over healthily more living

31 30 Doing more for ourselves for Doing more jaha.ahajournals.org/content/5/9/e003058.full

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The Nuffield TheTrust. Nuffield Delivering the 2016.benefits of digital health Feb care. American Heart Association. Internet and mobile devices prompt positive lifestyle changes. 2016. Aug Afshin A et al. Information Technology and Lifestyle: Evaluation A Systematic of Internet and Mobile Interventions for www.nuffieldtrust.org.uk/publications/delivering-benefits-digital-health-care e003058. Improving Diet, andAlcohol Activity, Physical Journal Use. Obesity, of Tobacco, the American Heart 5: Association 2016; newsroom.heart.org/news/internet-and-mobile-devices-prompt-positive-lifestyle-changes www.who.int/mediacentre/factsheets/fs355/en devices, including personal sensors. including devices, internet, their mobile phones mobile or their other internet, likely to adopt heart-healthy behaviours the via encouraged and guided when The review concluded that people that more are concluded The review not specifically into PHRs, show promise. show PHRs, into specifically not The findings of a recent review, although although review, recent of a findings The world each year. which kill 38 million people around the the around people million 38 kill which diseases as cardiovascular (such disease, respiratorycancer, diseases and diabetes), major cause of non-communicable, chronic chronic of non-communicable, cause major in the first place. Unhealthy lifestyles are a are lifestyles Unhealthy place. first the in improve our health or stop us becoming ill ill becoming us stop or health our improve us to change our behaviour in ways that that ways in behaviour our change to us A key question is whether PHRs could help help could PHRs whether is question A key Prompting changes positive in our lifestyles World HealthWorld Organization. Media Noncommunicable Centre. diseases. sheet. Fact Jan 2016.

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31 30 7 1 2 3 4 5 6 8 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk ‘There be should – perhaps guidelines the as such bodies professional from with deal to how – on Colleges Royal The and devices. from apps information data which define should guidelines should they when at, look to need doctors etc. it about do should they what it, at look that systems clever have could we Perhaps they something alertdoctors when there’s at?’ look to need Lisa Sullivan Then what do you do with those alerts? If GPs GPs If alerts? those with do you do what Then on that like information of lots getting are going they’re workload, existing their of top have to need We help. to people need to discussions about these things.’

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7: Page 38 Page automatic alerts when something is wrong. wrong. is something alerts when automatic GPs will have to be monitoring that data? We We data? that be monitoring to have will GPs generate systems that intelligent have could that and responding to it? Does this mean mean this Does it? to responding and that their record, who is responsible for checking checking for responsible is who record, their blood pressure in the night. If that goes into into goes that If night. the in pressure blood example, they might have a spike in their their in a spike have might they example, that information,’ says Dr Phil Koczan. ‘If a Koczan. Phil Dr says information,’ that for pressure, blood their checking is patient important questions about how we handle handle we how about questions important records in real time from devices, that raises raises that devices, from time real in records remotely and feeding in data into their their into data in feeding and remotely ‘If patients are monitoring their own health health own their monitoring are ‘If patients should respond to it. respondshould to information should be communicated to to be should communicated information they how and professionals care and health to consider how this patient-generated patient-generated this how consider to physical activity levels, then it’s important important it’s then activity levels, physical and devices that monitor our vital signs and and signs vital our monitor that devices and prompt us to record our own symptoms, symptoms, own our record to us prompt grow, and we play a greater role in monitoring monitoring in role a greater play we and grow, that apps as such tools using health own our If levels of self-care and self-management do do self-management and self-care of levels If patient-generated data How doctors respond to 8 1 2 3 4 5 6 7 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk 33

professionals and patients.’ professionals Making Harnessing Information IT Work: Care in England Improve to Technology ‘IT systems must be designed with the the with be designed must ‘IT systems basic employing users, end of input Poorly design. of user-centered principles systems implemented and designed can create opportunities for errors, and can result in frustrated healthcare users at all stages in the lifecycle of a PHR. of lifecycle the in stages all at users a very from in come to patients 13 or 12 got ‘We early stage in the design process for myhealth@ we’ve and us with things at look to QEHB Jim says along,’ way the all patients involved whether out work to us help ‘Patients Williams. We idea. a bad or idea a good is something back, come have People too. surveys out send that use don’t ‘We said, and example, for and so value,’ section,any it find adds don’t we off.’ turned we’ve two sections or one The importance of co-design of views the consulting recommended People Ease of use

Ease of use of Ease

Tim East seconds, people lose interest. People want want People peopleseconds, interest. lose things to work straightaway.’ app doesn’t work within five to 10 to five within work doesn’t app ‘You’ve got five to 10 seconds… if your your if seconds… 10 to five got ‘You’ve programme manager in Hampshire) Peter Cambouropoulos (an ICT (an Cambouropoulos Peter successful and products.’ unsuccessful ‘Ease of use makes the difference between between difference the makes use of ‘Ease Department of Health. Making IT Work: Harnessing Information Improve Care Technology to in England. Sept 2016 www.gov.uk/government/publications/using-information-technology-to-improve-the-nhs

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will need to be easy to set up and easy to use use to easy and up set to be easy to need will regularly. and widely be used to are they if People we spoke to emphasised how PHRs PHRs how emphasised to spoke we People 8 1 2 3 4 5 6 7 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk Just like some people choose to drive a Fiat or a Ford. What What a Ford. or a Fiat drive to choose people some like Just is Interoperability individual. each for best what’s is matters most.’ the like they what use can people so important Davies Dr Pete ‘People shouldn’t be pressured to use a particular product. product. a particular use to bepressured shouldn’t ‘People Ease of use

Ease of use Ease

8: Page 40 Page into their record.’ selection of their own apps and devices to log log to devices and apps own their of selection separate the platform from the integrated platform the integrated from the separate a use can patients that so record care digital informatics in Southampton. ‘We could could ‘We Southampton. in informatics open,’ says Adrian Byrne, a director of health health of a director Byrne, Adrian says open,’ ‘I think that the infrastructure needs to be to needs infrastructure the that ‘I think your money.’ your go to any bank, any cash machine, and get get and machine, cash any bank, any to go using the device and app of your choice. We We choice. your of app and device the using can you BACS… like a system create to need you want, when you want and how you want, want, you how and want you when want, you that means you can access your data where where data your access can you means that their data. We need to create a framework a framework create to need We data. their consider how people want to interact with with interact to want people how consider ‘I feel strongly that we need lots of choice for for choice of lots need we that strongly ‘I feel to need ‘We Hadley. Declan says patients,’ software of their own choice to access their their access to choice own their software of PHR. towards a situation where people can use the the use can people where a situation towards Some people work should we suggested Pick andPick mix software 8 1 2 3 4 5 6 7 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk 34

IT System is the Beginning, Not the End.’ End.’ the Not Beginning, the is System IT or hospital a large in period Live’ ‘Go The nonetheless is but difficult, always is trust to need systems IT start. Health the just workforce the and mature, and evolve for be must appropriate and leadership non- safety is patient While task. this negotiable, regulators and commissioners for tolerance of a degree have to need unanticipated and downs slow short-term in the period EHR consequences following implementation.’ Making Harnessing Information IT Work: Care in England Improve to Technology ‘[Principle no 8:] ‘Going Live With a Health a Health With Live ‘Going 8:] no ‘[Principle Ease of use

Ease of use Ease

Department of Health. Making IT Work: Harnessing Information Improve Care Technology to in England. Sept 2016 www.gov.uk/government/publications/using-information-technology-to-improve-the-nhs

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consent infrastructure to let a relative help.’ a relative let to infrastructure consent they want to help, but of course you need a need you course of but help, to want they support network. People’s relatives, carers… carers… support relatives, network. People’s help than you would expect. For people people expect. For would you than help a patient’s in bring can you struggle, do who people do need help, they can need more more need can they help, need do people Mohammad Al-Ubaydli. ‘But then when when then ‘But Al-Ubaydli. Mohammad using their PHR than you expect,’ says Dr Dr says expect,’ you than PHR their using ‘We’ve found fewer people need help help need people fewer found ‘We’ve face help. face telephone helplines and, if needed, face-to- needed, if and, helplines telephone offering supportoffering to people using whoare tutorials, online via example for PHRs, People also emphasised the importance of of importance the emphasised also People with the tech Helping people to get to grips grips to get to people Helping 8 1 2 3 4 5 6 7 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk 38 www.england.nhs.uk/2015/12/martha-lane-fox healthcare in Southampton. ‘The Royal new in this addressing is Physicians of College wide a using We’re journeys. user around work definition of takingaccessibility, into account dexterity, and eyesight like things physical and motivational cognitive and memory, problems. The definition of accessibility needs widened.’ beto explored and potentially the Fox, Lane Martha 2015, December In former UK Digital Champion, recommended in inclusion digital increase to ways key four sure making including care, social and health care social and health most the with those be to likely least the often are who needs, digital new any in first included are online, tools being used across the NHS. ‘The accessibility of PHRs is a concern,’ says says a concern,’ is PHRs of ‘The accessibility digital of a professor Wyatt, Jeremy Professor www.ons.gov.uk/businessindustryandtrade/itandinternetindustry/bulletins/internetusers/2016

stakeholders.ofcom.org.uk/binaries/research/cmr/cmr16/uk/CMR_UK_2016.pdf 35 www.reform.uk/publication/the-future-of-public-services-digital-patients s3-eu-west-1.amazonaws.com/digitalbirmingham/resources/Basic-Digital-Skills_UK-Report-2015_131015_FINAL.pdf 37 36 Ease of use

Ease of use Ease

Reform, 2016 least likely to own a device.’ a device.’ own to likely least income earners and older people - are - are people older and earners income to gain from health interventions - low - low interventions health from gain to own a smartphone, those most likely likely most those a smartphone, own ‘While three quarters of UK adults now now adults UK of quarters three ‘While Reform. The future of public services: digital patients NHS England. News. Ofcom. The communications market report, 2016, Aug Office forNational Statistics. Statistical Bulletin. Internet -Access Households2015. and Individuals: Ipsos MORI. Basic Digital Skills. UK Report 2015. www.ons.gov.uk/peoplepopulationandcommunity/householdcharacteristics/homeinternetandsocialmediausage/bulletins/internetaccesshouseholdsandindividuals/2015-08-06 NHS England. News. Martha Lane sets Fox out digital key proposals for the NHS. Dec 2015. Office forNational Statistics, Internet 2016, Users in the UK

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35 internet users. internet than a third of women over 75 were recent recent were 75 over women of a third than internet, compared to 10.2% of all adults. Less Less adults. all of 10.2% to compared internet, 25% of disabled adults have never used the the used never have adults disabled of 25% and 14% of households lack internet access. internet lack households of 14% and access PHRs. For example, around 12 million million 12 around example, For PHRs. access skills internet basic have don’t UK the in adults may be unable, or find it more difficult, to difficult, more it find or be unable, may As with any digital technology, some people people some technology, digital any As with Accessibility 8 1 2 3 4 5 6 7 9 10 11 Feedback Appendices + Reading

Summer 2016 , Appendix E, E, , Appendix , www.pifonline.org.uk www.pifonline.org.uk Specification two free e-learning modules and Implementation Guidance Implementation Implementation Guidance Implementation and explains how and why this is relevant. Further information on the AIS is available in in available is AIS the on information Further the Update The AIS doesn’t specifically include unless a health or accessibility, website or a patient referred has professional care information. for a website to user service 5.6.4 ‘explanatory note about health and the in websites’ care social details what providers providers what details ents are explained in the AIS AIS the in explained are ents , which The individual patient, service user, serviceThe patient, individual user, the of be aware should parent or carer their about recorded exact information support and communication information needs, including to verify accuracy. or patients enable systems online Where records, own their access to users service 1998 Act Protection Data to subject and enable must systems: such safeguards, recorded data the review to individual an about their communication and information necessary; if changes request and needs exists, functionality necessary where and, should enable an individual to record their own communication and information needs using this system where appropriate.

These requirem Specification must care social adult and/or care NHS of Standard. the with comply to order in do The AIS includes some specific requirements requirements specific some includes AIS The around Personal Health Records, including: can easily easily can

, so they can communicate communicate can they , so Ease of use

Ease of use Ease

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or adult social care must follow the AIS. the follow must care social adult or By law, all organisationsBy that law, provide NHS care effectively with health and social care services. services. care social and health with effectively read or understand have a disability, impairment or sensory loss are are loss sensory or impairment a disability, have provided with information that they The AIS aims to make sure that people who who people that sure make to aims AIS The Standard (AIS) The Accessible Information The Accessible 8 1 2 3 4 5 6 7 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk Health Records help people to overcome overcome to people help Records Health a patient If disabilities. cognitive and physical let understand go them something, doesn’t someone with PHR their on it see and home it’s and a wheelchair use you If help. can who your see to travel to easy that necessarily not you and fibrosis cystic have you or doctor, patients other with room a waiting in sit can’t a have could you risks, infection of because PHR. your using instead consultation video you but paper, with work don’t readers Screen Know Patients PHR. your read to them use can languages. Where different Best works in 19 19 in paper on things get to going you are languages?’ different ‘Technology is really a bridge, not a barrier,’ barrier,’ a not a bridge, really is ‘Technology says Dr Mohammad Al-Ubaydli. ‘Personal a simplifier, which block on-screen clutter and and clutter on-screen block which a simplifier, reading for easier distracting content remove There’s disorders. for people cognitive with an generates which creator, file MP3 an also own your at offline listen can you so file MP3 leisure.’ own your and pace Texthelp’s Kevin Cross.Texthelp’s ‘I genuinely believe our software changes lives. Low income earners, English or literacy, low with those people, older often are biggest the challenges language to likely most the but services, health of users dyslexia, with A person online. be excluded help for ask to be happy might example, for a holiday. book to site a travel using when help for ask to keen be less may they But when personal accessing health information, very It’s matter. a very private is health because to accessibility that have to them for important their health information.’ NHS as such websites, on software sits ‘Our and website, England’s it turns text into loud. text out reads ‘It Kevin. adds speech,’ the helps which a text magnifier, also There’s visually impaired. The software will translate 99into languages. There’s a screen mask and ‘We develop software that improves the the improves software that develop ‘We accessibility of online information,’ says Ease of use

Ease of use Ease

family who do speak English.’ speak do who family Brindle Ingrid of what’s been said during consultations consultations during said been what’s of and friends from help seek can you and ‘If you don’t speak English as a first a first as English speak don’t ‘If you you gives records your viewing language, understanding your build to time more Declan Hadley There are screen readers, for example, for people no with vision.’ you can do with digital that you can’t can’t you that digital with do can you accessibility. improve to paper with do ‘The digital revolution provides all sorts all provides revolution ‘The digital of opportunities. There are lots of things

8: Page 44 Page information. accessibility of healthrecords and health enthusiastic about the opportunities the increase to provide technologies digital Many of the people we spoke to were were to spoke we people the of Many down barriers Using digital technology to break break to technology digital Using 8 1 2 3 4 5 6 7 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk ‘Although engagingwith ‘Although digital healthcare is, I remain ‘improvisation’, of a case still me, for report proves, As this future. the for positive about. be positive to on going much there’s that there remain significant barrierstousing significant remain there that digital tools to manage and communicate about their health. by ‘Accessible yet not but default’ by ‘‘Digital way some has still healthcare – digital design’ a DeafBlind Leicester, Howard Dr says go,’ to professional in health informatics. ‘Records are still largely organised for content clinicians; for navigation, while jargon; of full remains expensive mostly on depends me, like those like technologies’ ‘assistive difficult and screen-readers.’ years 20 me for possible became PhD ‘A in available were data Reports and ago. the because time, first the for form, electronic in A thesis online. went Health of Department consequence automatic the was format .doc properlyof into loading labelled webpages Microsoft Word.’ However, the reality for many people living living people many for reality the However, is challenges accessibility or a disability with literacy problems. It also handles video handles literacy It also problems. and audio, all of which can be shared a web in users remote authenticated with browser.’ ‘Our experience been has this that a vulnerable empowers approach demographic (people with learning better to them enables and disabilities) engage with their healthcare. Initial reports a decrease suggest data trial our from in the number of episodes engagement Guide Health My use people when prior.’ 6 months to compared Ease of use

Ease of use Ease also be converted into text) to help with with help to text) into be converted also ‘My Health Guide speaks text to people, and and people, text speaks to Guide Health ‘My can (that messages voice record them lets carries it around with them on their tablet. tablet. their on them with around it carries is.’ information the are, they Wherever Health Guide works, because the person person the because works, Guide Health providers. That’s why something like My My like something why That’s providers. between different social care and health health and care social different between ‘Paper records do not transition well well transition not do records ‘Paper not the health or care professional, control.’ different approach, putting the person at the the at person the putting approach, different them, giving and information, their of heart individuals themselves. We’ve taken a taken We’ve themselves. individuals care via My Health Guide, including the the including Guide, Health My via care between everyone involved in an individual’s individual’s an in involved everyone between solving is allowing better communication bettersolving allowing is communication ‘Part of the problem we’re involved in in involved we’re problem the of ‘Part Lorenzo Gordon on a PHR for people with learning disabilities disabilities learning with people for a PHR on Gordon Lorenzo

8: Page 45 Page 8 1 2 3 4 5 6 7 9 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk

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Page 46 Page as the necessary foundation.’ things in life, making ‘accessible’ the design design the ‘accessible’ making life, in things health with and sectors, all across approach position. We all depend on health to do other other do to health on depend all We position. accessibility considerations the ‘default’ ‘default’ the considerations accessibility is using mobiles and tablets, mobiles making using is an accessibility Nearly exemplar. everyone ‘Above all, digitalhealthcare will become‘Above with ‘special needs’.’ controlled systems will realise these are the the are these realise will systems controlled some by used Technologies’ ‘Assistive same Doctors and nurses using speech and gesture gesture and speech using nurses and Doctors 9 1 2 3 4 5 6 7 8 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk

40 about the technology, it is mostly about about mostly is it technology, the about investment on Return people… the from digitisation is not just financial… is investment on return short-term of form the in come to likely more quality safety and in improvements savings Cost terms. financial raw in than emerge to more or years 10 take may so-called(the ‘productivity paradox’ gains these to keys the since IT), of technology, the in improvements are localworkforce, theof reconfiguration adaptation to digital technologies, and a re-imagining of the work.’ Harnessing Work: IT Making Improve to Technology Information Care in England ‘Digitising effectively is not simply simply not is effectively ‘Digitising

39 Evidence of impact of Evidence

Evidence of impact Evidence

Department of Health. Making IT Work: Harnessing Information Improve Care Technology to in England. Sept 2016 www.gov.uk/government/publications/using-information-technology-to-improve-the-nhs www.ama-assn.org/ama/pub/news/speeches/2016-06-11-madara-annual-address.page James L Madara. Digital Dystopia. June 2016.

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40 39

magnificent’. snake oil’, while sayingothers oil’, snake are ‘potentially some digitalhealth products to ‘digital The CEO of the American Medical Association, Association, Medical American the of CEO The likening as far as gone has Madara, James outcomes’. The RCP also highlighted a ‘lack of a of a ‘lack highlighted also RCP The outcomes’. viable business case’. assessed their impact on health processes or designed quantitative studies that objectively that studies quantitative designed patients feel about PHRs, rather than on well- on than rather PHRs, about feel patients concluded that ‘evidence in the UK is based based is UK the in ‘evidence that concluded how on views obtained that studies small on The Royal College of Physicians (RCP) has has (RCP) Physicians of College Royal The in the UK. In its recent Landscape Review, Review, Landscape UK. recent its the In in scarcity of evidence on the impact of PHRs PHRs of impact the on evidence of scarcity One thing that concerns some people is a is people some concerns that thing One large degree, yet to be revealed. well we can seize those opportunities is, to a to is, opportunities those seize can we well provide enormous opportunities to change opportunities enormous change to provide How care. and health our approach we way the PHRs are essentially tools. They are tools that that tools are They tools. essentially are PHRs 9 1 2 3 4 5 6 7 8 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk ‘It’s obvious what the costs of records records of costs the what obvious ‘It’s so not it’s but practices, GP to are access to hard It’s are. benefits the what obvious the ring I don’t times many how quantify It’s records. my to access I have if practice what do, don’t you what quantify to hard access. got you’ve because doing stop you done.’ been has research of a lot Not Brindle Ingrid ‘There can also be work associated with with associated be work also ‘There can helping people to use their record,’ adds Amir. work can’t they if do to going people are ‘What are They system? record the use to how out we’re a service It’s surgery. GP the ring to going the in only It’s a record. just not providing, reset to able been have patients that year last people that, Before themselves. for passwords the reset always to had practice GP the from them.’ for passwords easier and more enjoyable. ’ enjoyable. and more easier ‘Patients are invited to get records access access records get to invited are ‘Patients out fill to them ask We understanding. and a questionnaire. The practice staffspend some time processingrequests, reading people check to understand questionnaires what they are signing up for and reading through records to check whether they contain harm.’ them cause may that information any having is and a crisis in is practice ‘General workload. the that Anything prioritise to be scary and to going is workload increases to need We it. doing from practices prevent are practices activities what at look urgently to extra value any add not do which doing could which or practice the or patient the who Patients others. by be done legitimately can better manage their care can reduce for outcomes health workload, improve staff practice for jobs the make and themselves

section Evidence of impact of Evidence

Evidence of impact Evidence

, is how PHRs affect overall workload. overall affect PHRs how , is

Page 48 Page Amir Hannan. encouraged rewarding good rewarding work,’encouraged Dr says certain targets which were quality markers and Framework rewarded practices for achieving get the job done. The Quality and Outcomes Outcomes and Quality The done. job the get or cancer. GP practices are funded to deliver deliver to funded are practices GP cancer. or to needed work the recognises which care with diabetes, heart disease, mental health practices just as newly diagnosed patients initially generates increased workload increased generates for GPinitially ‘Giving people access to their records records their to access people ‘Giving 11 explained below. One of the things we’d like to to like we’d things the of One below. explained in highlighted as about, more out find healthcare professionals in GP practices, as as practices, GP in professionals healthcare inevitably involved changes to workflow for for workflow to changes involved inevitably Giving patients access to GP records has has records GP to access patients Giving Changes to workflow 9 1 2 3 4 5 6 7 8 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk

43 42 adults think they should have full access access full have should they think adults of one-third only records, health their to doctors share this view.’ Parliamentary Office ofScience and 2016 Technology, is provider care health enabled a digitally ‘Becoming with processes paper or analogue replacing about not done, is work what rethinking about is It ones. digital on capitalising and done is it how re-engineering Where adapt. and learn to data by afforded opportunities technology failed, have interventions technological structures existing of top on layered been simply has workload for additional patterns, creating and work careful without Indeed, professionals… care health and inefficiencies staff can they create implementation care.’ of quality the threaten even and frustration 2016 February Trust, Nuffield ‘Surveys show that while three-quarters of of three-quarters while that show ‘Surveys www.nuffieldtrust.org.uk/publications/delivering-benefits-digital-health-care 41 Evidence of impact of Evidence

Evidence of impact Evidence

Association 2015 of the American Medical Informatics Susan Wells et al, writing in the Journal Journal the in writing al, et Wells Susan change projectchange an IT with component.’ be viewed as an operational and culture culture and operational an as be viewed Salient advice was that implementing a implementing that was advice Salient should it Instead project. IT an not is PHR professional encouraged them to do so… do them encouraged to so… professional uptake and use was if their trusted health health trusted their if was use and uptake strategy for promoting patient PHR PHR patient promoting for strategy patients. This coupled was with uniform effective most single the that agreement the impact on their workload and on their their on and workload their on impact the physician resistance due to concerns about about concerns to due resistance physician implementation was perceived to be to perceived was implementation ‘The greatest barrier to PHR PHR to barrier ‘The greatest Nuffield Trust.Nuffield Delivering the benefits of digital health care Wells S et al.Wells Organizational strategies for promoting patient and provider uptake of Personal Health Records. J Am Med Inform Assoc 2015;22:213–222. researchbriefings.parliament.uk/ResearchBriefing/Summary/POST-PN-0519 www.ncbi.nlm.nih.gov/pubmed/25326601 Houses Electronic of Parliament. February519 2016. Parliamentary Health Records Office Postnote Technology. of Science and

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41 9 1 2 3 4 5 6 7 8 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk Pete conducted an analysis of his data to to data his of analysis an conducted Pete might PHR the of use extent what to out find appointment hospital for need the avoid nearly for that were findings ‘My attendance: that evidence clear was there patients of half had attendance face-to-face one least at use periodbeen for (median patients avoided was use-period longest the 5 months, was The analysis). the of time the at months 11 avoided who patients the for that was flipside I had and team my attendance, hospital with messages many as twice exchanged them, which highlights an important issue on impact can practice changing how about work as extra conceived be and flows work for healthcare professionals.’ Evidence of impact of Evidence

Evidence of impact Evidence maximum value from less effort.’ from less value maximum activity Everyone gets add value. where you the process. It lets you get straight to the the to straight get you lets It process. the a PHR, is perfect. It cuts out all the waste in in waste the all perfect. out is cuts a PHR, It all to answer a very simple question. The The question. a very simple answer to all via direct sent message a secure alternative, wasteful, non-value-addedwasteful, of activities trail Vera?’ So I ring Vera and she’s not in. That’s a That’s in. not she’s and Vera I ring So Vera?’ message in my inbox saying, ‘Can you ring ring you ‘Can saying, inbox my in message get an answerphone, or a secretary might might a secretary or answerphone, an get a get I may a message. on pass they’ll say through to me on the phone, they might might they phone, the on me to through Dr Pete Davies. ‘If a patient tries to get get to tries ‘Ifpatient a Davies. Pete Dr waste in healthcare and add value,’ says says value,’ add and healthcare in waste technology like PHRs can help to eliminate eliminate to help can PHRs like technology ‘We’ve been investigating whether using Can using PHRs help bring about efficiencies? about bring help PHRs using Can

9: Page 50 Page 9 1 2 3 4 5 6 7 8 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk include patients reporting increased 45 ‘Fully integrated, patient-centred PHRs PHRs patient-centred integrated, ‘Fully would form a unique research resource we’ve fact that the of - because UK the in into research organised - for NHS the got health conditions, preventing them and treating them.’ Richard Pantlin Further benefitsin highlighted two systematic reviews andconvenience improved self-care, and patient-led safety improvements through identifying medication errors and facilitating services. preventative of use increase report a moderate reviews These in change no messaging, online or email of effects contacttelephone and variable on tasks other However, contacts. face-to-face which services, these sustain to necessary were no were There time. physician on impacted The privacy. of breaches or harm reports of about evidence of report a lack also reviews better into translates access online whether health outcomes.

44 Increased ability of patients to make make to patients of ability Increased informedmore decisions Improved access to care services care to access Improved Expanded knowledge health for patients Increased information sharing workload for Reduced administrative practice staff satisfaction patient Increased Improved communication between patients and practices for efficiencies operational Increased practices for patients Reduced travel not do who [people DNAs of Reduction attend their appointments] for practices

Patient OnlinePatient highlights the following their to access people giving of benefits GP records:

bmjopen.bmj.com/

Evidence of impact of Evidence

Evidence of impact Evidence

de Lusignan S et al. Patients’ online their to access Mar;65(632):e141-51. doi: 10.3399/bjgp15X683941. Mar;65(632):e141-51. health records and linked online services: a systematic review in primary care. Br J Gen Pract. 2015 Mold et F al. Patients’ online their to access electronic electronic health records and linked online services: a systematic interpretative BMJ review. Open 2014;4:e006021 Edition. March 2016. bjgp.org/content/65/632/e141.long content/4/9/e006021.full www.england.nhs.uk/ourwork/pe/patient-online Patient Online Support and Resources Guide 2nd

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doi:10.1136/bmjopen-2014-006021. doi:10.1136/bmjopen-2014-006021.

increased take up of PHRs. of up take increased review of potential benefitssupportwould of potential review to find out more, and believe a comprehensive comprehensive a and believe out find more, to highlight further information that we came keen are We guide. this on working while across on the benefits and impact of PHRs. Below we Below PHRs. of impact and benefits the on guide give you a good idea of people’s views views people’s of idea a good you give guide We hope the quotes that we’ve included in this this in included we’ve that quotes the hope We Evidence of benefits of Evidence 9 1 2 3 4 5 6 7 8 10 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk www.gov.uk/government/speeches/six-questions-every-innovator-should-ask disseminating the changes across and between healthcare systems? How can these benefits be spread by spread be benefits these can How How will this innovation significantly and pathway clinical patient’s the change establish a new standard of care? What will be the positive clinical, social and economic impacts from this changed andpathway new standard of care? be measured impacts these will How provide to precision sufficient with of for adoption the evidence compelling the innovation? be will workflow in changes What these benefitof the maximise to required care and health a defined in impacts system? How will the re-engineering of this workflow beresourced? 1 2 3 4 5 6 www.gov.uk/government/organisations/accelerated-access-review/about has pinpointed six key issues issues key six pinpointed has 46 Evidence of impact of Evidence

Evidence of impact Evidence

organisations who are using them: have any chance of being widely adopted adopted widely being of chance any have developers help could which NHS, the in care and health the as well as PHRs of that innovators should be able to answer answer to be able should innovators that to is product their if stage, very a early at Potential areasPotential of reform include regulation, reimbursement and uptake. Jeans John speed up access to innovative drugs, drugs, innovative to access up speed patients. NHS for diagnostics and devices Accelerated Access Review to aims Review Access Accelerated The Accelerated Access Review. About Review. Accelerated Access us. What do. we Accelerated Access ReviewAccelerated Access and John Jeans. Six questions every health innovator should ask. Nov 2015.

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46 10 1 2 3 4 5 6 7 8 9 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk and benefits of PHRs, drawing on voices of voices on drawing PHRs, of benefits and together bringing by conclude experience. We when consider to you for things of a list may a PHR whether and how about thinking life, professional or personal your in you help or serves organisation your people the help or caresfor. listedWe’ve features that people highlighted being as particularly our discussions during We’ve for. out look to things important seem that functions and features included or exist already they whether desirable, help will this hope We not. do they whether a make boundaries, the push to everyone seize to best how explore and PHRs of success opportunitiesthe many offer. they In the previous sections of this guide, we’ve we’ve guide, this of sections previous the In summarised issues, opportunities, challenges

Checklist of key things to consider with PHRs with consider things to Checklist of key Checklist of key things to consider with PHRs with consider to things Checklist key of

10: 10:

Page 53 Page records. that aim to create more integrated health health integrated more create to aim that there are several schemes across the country country the across schemes several are there teams often cannot do that either, although although either, that do cannot often teams care records together into one place without without place one into together records care putting in the work themselves. Healthcare pull digital copies of all of their health and and health their of all of copies digital pull people will find it hard, if not impossible, to impossible, not if hard, it find will people but few people have done that so far. Most Most far. so that done have people few but from commercially available apps, wearables records, NHS with devices smart other and It’s starting to be possible to integrate data data integrate to be possible to starting It’s plans from social care tend to be on paper. paper. be on to tend care social from plans your hospital records in a similar way. Care Care way. a similar in records hospital your records systems. You might be able to access access to be able might You systems. records added to the GPs’ own electronic medical medical electronic own GPs’ the to added your GP records via the patient portal that’s portal that’s patient the via records GP your At the moment you should be able to access access to be able should you moment the At it tends to be available in silos. in be available to tends it What’s on offer from the NHS, social care and and care social NHS, the from offer on What’s whole, the on and, varies world consumer the The world of PHRs is growing, but fragmented. fragmented. but growing, is PHRs of world The 10 1 2 3 4 5 6 7 8 9 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk Is the content up to date? to up content the Is Is there a clear audit trail, trail, audit a clear there Is what, contributed who’s showing who’s as well as how, and when when? and what accessed

2. 3.

collate a personal library of of library a personal collate add in their own notes own their in add questionnaires and other patient reported outcome measures? health and care professionals contribute favoured health information and sources of support fitness as such wearables apps, such devices, smart and trackers monitors bloodas pressure life of quality as such tools comment on information that that on information comment input information using structured feed in data automatically from from automatically data in feed

they’ve added? they’ve information, so the PHR provides provides PHR the so information, what of picture complete a more they… Can them? to matters i ii iii iv v Can people delete information that that Can people information delete Can people own add their

e d

any hospital specialists they see, and and see, they specialists hospital any home? at them help who carers any together into one place all the records records the all place one into together that health and care professionals GP, their like people them, about make record go? health and care professionals’ records parts? certain just or them about How far back in time does the does time in back far How Does the PHR enable people to bring bring to people enable PHR the Does Can people see the entire content of of content entire the see people Can

Checklist of key things to consider with PHRs with consider things to Checklist of key c b a in the PHR? For example: For PHR? the in How comprehensive is the information is the information How comprehensive

Checklist of key things to consider with PHRs with consider to things Checklist key of

The information content The information

10: Page 54 Page 10 1 2 3 4 5 6 7 8 9 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk the full functionality be introduced at once, or will it be it will or once, at be introduced functionality full the more the with starting way, incremental an in introduced time? over range the extending and functionalities basic using the PHR? What are the incentives for using the PHR? the using for incentives the are What PHR? the using clear? use of terms the Are responsibilities? documents that help people to think through how they of consequences possible the and PHR, their use will doing so? with fits PHR the using how when, and what do to and how clear it is example, For life? with and workflows patients? by view for be released will results test when expected professionals care and health are quickly How there if do people should What messages? to respond to people should how And record? the in mistakes are and devices? from data apps to respond If the PHR is new and only just being introduced, will will introduced, being just only and new is PHR the If Is the vision clear? Does everyone know why they are are they why know everyone Does clear? vision the Is other and questionnaires to access have Do you expected is who understand, users all do and clear, it Is Do individual users understand their own rights and and rights own their understand users Do individual

e Does everyone know what to expect? to what know everyone Does a b c d

5. helpdesk, and the option of face-to-face, hands- face-to-face, of option the and helpdesk, onsupport? Are there online tutorials, an online or telephone telephone or online an tutorials, online there Are

i material so you can easily tell different users about different it? tell so can you easily material Does the provider supply ready-made promotional ready-madeDoes supply promotional provider the Can people access technical support if they need it? need they if support technical access people Can

Checklist of key things to consider with PHRs with consider things to Checklist of key professionals)? a b Is training available for everyone who will use the the use will who everyone for available training Is PHR (including patients, carers and health and care

Checklist of key things to consider with PHRs with consider to things Checklist key of

Providing training and managing expectations

10: Page 55 Page 10 1 2 3 4 5 6 7 8 9 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk enable accessibility for all? For For all? for accessibility enable screen with work it does example, readers or screen simplifiers? languages? What features does it have to to have it does features What Is the PHR availablein different

How accessible is the PHR? the is accessible How a b

the PHR? Is there an opportunity for for opportunity an there Is PHR? the PHR the of improvement ongoing iterative via example for system, account into take that modifications types users? of all from feedback information is displayed to suit users’ needsdifferent indifferent circumstances, so each person in PHR the of bits right the sees the right ways? and devices) from wearables apps, act people can and meaningful upon it? and health and care professionals) development, during been involved of and appraisal implementation Can you customise the way way the customise you Can Is the information (including data Have users (including patients, carers patients, users (including Have

c d e peersupport groups services and community groups in their area, and support support and area, their in charities offeredby health with, diagnostic tests they have, medications they are prescribed and treatment find to ways and support illnesses people are diagnosed diagnosed are people illnesses

without Is it training? intuitive? any And where does that information information that does where And from? come ii iii i intelligent gateway to online health gateway intelligent boosts that a way in information does example, For understanding? it include links to information on: Is the system easy enough to use use to enough easy system the Is Does the PHR provide an an provide PHR the Does

Checklist of key things to consider with PHRs with consider things to Checklist of key b anything once set it’s up)? a Is the PHR easy to set up, use and understand? Is it appealing or even invisible invisible even or appealing it Is understand? and use up, set to easy PHR the Is do to needing user the without background the in operates it (meaning

Checklist of key things to consider with PHRs with consider to things Checklist key of

Usability

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prescriptions and have a say in referrals? in a say have and prescriptions and alerts? roles? ofpeople’s different of care providers? Can patients book appointments, order repeat repeat order appointments, book patients Can reminders with function, a diary there Is explanations with list, a contact there Is services the rate to PHR their use people Can What other things can people do with the PHR? the with do people can things other What 9. Doing other things Checklist of key things to consider with PHRs with consider things to Checklist of key consultations, speech to text, social networks. text, social to speech consultations, on later back check can patients so record them? told have people what privately and through forums? and through privately for example email-style included, are secure messages, instant messages, video who helps out with their health and care, is is care, and health their with out helps who the communication secure? both them, as challenges same the facing are Can messages beCan messages and added the recorded to Can patients communicate with people who who people with communicate patients Can options sortWhat of communication Can patients communicate with everyone everyone with communicate patients Can Can people use their PHR to communicate? to PHR their use people Can

Checklist of key things to consider with PHRs with consider to things Checklist key of

Communicating

10: Page 57 Page 10 1 2 3 4 5 6 7 8 9 11 Feedback Appendices + Reading www. www.pifonline.org.uk www.pifonline.org.uk Tech UK. PersonalTech Digital Care. technology Using enabled transform care to healthour and nation’s create UK wealth. Nov 2015. techuk.org/insights/reports/ item/6224-personal-digital- care-paperaccelerated-access- review/about

Does the PHR notify people about clinical about people notify PHR the Does Does the PHR have an analytics function to to function analytics an have PHR the Does Does the PHR enable people to capture real- capture to people enable PHR the Does coordinate the physical, mental and social social and mental physical, the coordinate elements of health? market or them to relevant are that trials products to them? themselves and monitor their progress towards towards progress their monitor and themselves on instructions provide it Does goals? those either – feedback motivational or do to what and health from input with or automatically careprofessionals? time information about their symptoms, self-report, or (using feelings behaviour questionnaires, and apps, wearables and and sharedevices) that information with others? their in patterns recognise to people help symptoms, or feelings behaviour? offeredby NHS, social communitycare, help to organisations sector voluntary and Does the PHR enable people to set goals for for goals set to people enable PHR the Does Does the PHR link to a wide range of services services of range a wide to link PHR the Does

h. d. e. f. g.

47 Does the PHR enable you to take advantage advantage take to you enable PHR the Does and share information about what matters face they challenges the and them to most in daily life? Does the PHR link to decision aids? decision to link PHR the Does their record plan, care own their follow and and priorities preferences personal treatment consultations) and telecare (a system of sensors sensors of system (a telecare and consultations) and environment a person’s monitor to used and community or home the in behaviour support or help need might they when identify action can beso taken)? appropriate remote monitoring can (which enable more interventions early proactive and targeted outside fall symptoms and/or signs vital if can (which telehealth setthe parameters), video via expertise specialist to access improve of new models of care that use, for example, example, for use, that care of models new of Can people use the PHR to contribute to to contribute to PHR the use people Can

Does the PHR enable people to take more more take to people enable PHR the Does b. c. work together with health and care professionals, and others, in new ways? a. responsibility for their own health and care, and Checklist of key things to consider with PHRs with consider things to Checklist of key

10.

Checklist of key things to consider with PHRs with consider to things Checklist key of

Seizing opportunities modelsSeizing for new of care

10: Page 58 Page 10 1 2 3 4 5 6 7 8 9 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk Is the data used for the person’s own direct care and is it used for for used it is and care direct own person’s the for used data the Is Does the person who the PHR is about control who sees what, what, sees who control about is PHR the who person the Does Is it clear when, how, why and with whom data is shared? is data whom with and why how, when, clear it Is assess how safeare. how and effectivetreatments assess different any wider purposes, e.g. big data analyses that aim to determine determine to aim that analyses data big e.g. purposes, wider any performing, is unit specialist or hospital a particular well how or disease, a particular for, factors risk or of, spread the track and can they change privacy settings easily? settings privacy change they can and

Is there a reliable way to verify the identity of everyone who logs-in? who everyone of identity the verify to way a reliable there Is Is it easy for users to find out how their data is used, stored, passed passed stored, used, is data their how out find to users for easy it Is Who owns the data, who controls how it is used and who benefits benefits who and used is it how controls who data, the owns Who on or sold to third parties, or what would happen if the company company the if happen would what or parties, third to sold or on involved goes into administration? breaking in? iii. from it? i. ii. Where is the data stored and how is it moved around? moved it is how and stored data the is Where Is the system secure enough to prevent unauthorised users from from users unauthorised prevent to enough secure system the Is

Can patients download information from their PHR? Can they share share they Can PHR? their from information download patients Can Is the PHR private and secure? Are effective information governance governance information effective Are secure? and private PHR the Is e. c. d. processes in place? in processes a. b. information in their PHRwith other people? Checklist of key things to consider with PHRs with consider things to Checklist of key

11. 12.

Checklist of key things to consider with PHRs with consider to things Checklist key of

Privacy, securityPrivacy, and sharing information

10: Page 59 Page 10 1 2 3 4 5 6 7 8 9 11 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk What devices can you use the PHR with? PHR the use you can devices What Can you use a single device to access more more access to device a single use you Can than one PHR? in data the with interact to choice own their now, be possible to unlikely is (This PHR? their future.) the be in may but Can people choose a front end or software of software of or end a front choose people Can

What standards does the PHR use and do they they do and use PHR the does standards What with different browsers and front ends? and front browsers different with a. b. c. enable full interoperability with other systems? Does the PHR work on different devices and and devices different on work PHR the Does

14. 15. Flexibility and standards that’s used and designed with them. They want to know know to want They them. with designed and used that’s want and you giving are they information the of value the It’s prevention. about It’s it. with doing you’re what know to about communication. It’s about relationships.’ 2016 May e-Health UK Week, at Adebowale, Victor Lord ‘This is in the expectations of millennials… young people. people. young millennials… of expectations the in ‘This is They care. social and health of expectations have They things expect have They to patients. not expect be citizens to expecttech They place. first the in ill getting them stop that For example, does the PHR PHR the does example, For people manage any conditions conditions people any manage they got)? have shared decision making, promote lifestyles, healthy and help improve people’s health, by (both wellbeing and fitness preventing illness and helping improve the quality and coordination of care, support

Can you tell how the PHR will impact impact will PHR the how tell you Can Is there a clear business case for the the for case business a clear there Is harms of using the PHR? the using of harms i. implications are for staffing needs, needs, staffing for are implications models? payment and needs training it? for what pays Who PHR? clinical processes, workflows of health and careprofessionals and the what and services, for demand Is there evidence on the benefits and and benefits the on evidence there Is

c. b. a. using the PHR? the using Is there clear evidence on the impact of of impact the on evidence clear there Is Checklist of key things to consider with PHRs with consider things to Checklist of key

13.

Checklist of key things to consider with PHRs with consider to things Checklist key of

Impact

10: Page 60 Page 11 1 2 3 4 5 6 7 8 9 10 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk How can PHRs impact the lives, lives, the impact PHRs can How health, fitnessand wellbeing of the are What them? use who people potential benefits and harms? do to patients supporting PHRs Are facilitating they are themselves, more self-care ultimately, and are they, improving health outcomes? enable to PHRs use we can How research, to contribute to people giving by or trials in actively either data? their to access much time do professionals spend do time professionals much the are what and messages those on of forms other effects on on knock communication, including telephone consultations? face-to-face and calls What are the implications regarding when? and who does what

10 8 9

of health and care professionals? secure use people if example, For their with communicate to messages health or care professional, how Which companies are developing and (including PHRs for tech supplying direct and care social NHS, the to What public)? the and patients to have do they recommendations the seize to everyone help to opportunitiesPHRs? offeredby being is sort research of What make to best how into conducted the to respond and of sense be can that data of streams vast the apps, mobile by generated sensors in wearables, smartphones wider the and devices, other and internet of things? lives working the affect PHRs do How 5 6 7 Where to next? to Where Where to next? to Where by different people? different by access to untethered PHRs that join join that PHRs untethered to access up records created in different places How many patients and how many many how and patients many How health and care professionals have them, what would they like to do that that do to like they would what them, do? can’t they What do people think of PHRs? What What PHRs? of think people do What What PHRs? from want people do worries what appealing, find they do like age and whether or not people people not or whether and age like a long-term condition? have What sort of people are using PHRs PHRs using are sort people of What things vary with usage does how and how often are they using them and and them using they are often how for? them using they are what How many people are using PHRs, PHRs, using are people many How

4 3 2 1

11: 11: Page 61 Page Here are some of the things we’d like to find out more about: more out find to like we’d things the of some are Here with people about PHRs have raised as many questions as they have answers. answers. have they as questions many as raised have PHRs about people with As is probably inevitable in the early days of a new technology, our conversations conversations our technology, new a of days early the in inevitable probably As is 11 1 2 3 4 5 6 7 8 9 10 Feedback Appendices + Reading www.pifonline.org.uk www.pifonline.org.uk or PHRs more widely, we’d be really be really we’d widely, more PHRs or interested to hear from you. If you have any experience, evidence or experience, evidence any If have you points, these of any on share to research which PHRs, apps and devices to use use to devices and apps PHRs, which them? use to how and to easy are PHRs think Do people and use, to easy and understand improve to do to need we do what things? What can we do to help people to tell tell to people help to do we can What

16 15 Where to next? to Where PHRs and other digital health health digital other and PHRs be can more what and technologies, done here? what to ensure good interoperability interoperability good ensure to what betweenPHRsand different between health world (including mobile apps, apps, mobile (including world health telecare, telehealth, teleconsultations doing who’s technology), wearable and How do they affect spending? affect they do How digital wider the within fit PHRs do How possible new models of care? of models new possible PHRs? for models business the are What should they have? they should explore to PHRs using people are How What features do existing PHRs have to to have PHRs existing do features What features what and accessibility boost

Where to next? to Where

14 13 12 11

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[email protected]

Feedback

Invitation to provide feedback feedback provide to Invitation Page 63 Page

contact us at at us contact If you would like to give your feedback your give to like would you If higher qualityand more relevant information future. the in are aware of, you can help us to produce produce to us help can you of, aware are sharing related any research or projects you By giving us constructive feedback,By constructive us giving and suggestions about this publication We welcome your comments and and comments your welcome We Appendices 1 2 3 4 5 6 7 8 9 10 11 Feedback + Reading

www.pifonline.org.uk www.pifonline.org.uk Are distinct from portals that simply allow allow simply that portals from distinct Are or information view provider to patients communicate with providers PHRs Properly designed and implemented, health their manage patients help can the in partners full become and information quest for good health.’

www.rcplondon.ac.uk/projects/outputs/personal-health-record-phr-final-report 50 www.2020health.org/2020health/Publications/publications-2012/Public-Health-Records.html Are managed by patients from a variety information of Can include and providers care health including sources, themselves patients and securely patients help Can health and monitor store confidentially data or plans diet as such information, as well as systems, monitoring home from patient contact information, diagnosis lists, immunization lists, allergy lists, medication more and much histories, the replace, not do and from, separate Are provider care health any of record legal

application used by patients to maintain and and maintain to patients by used application manage their health information in a private, secure, and confidential environment. PHRs: HealthIT.gov (USA) electronic an is (PHR) record health personal ‘A www.healthit.gov/providers-professionals/faqs/what-personal-health-record 48 49 Some definitions of Personal Health Records Health Personal Some of definitions t is a personalt is health record? Appendix A Appendix

2020health.org. Personal Health Records Putting patients September in control? 2012. HealthIT.gov. Wha HealthIT.gov. Royal College of Personal Physicians. health record landscape (PHR) Final report review. 2016. May

Appendix A: A: Appendix Page 64 Page 50 48 49 parts of it available to those who need it.’ need who those to available parts it of health information and make appropriate appropriate and make information health ‘An Internet-based set of tools that allows allows that set tools of Internet-based ‘An lifelong their and coordinate people access to Markle Foundation to their care record.’ health and care services, and/or to have access access have to and/or services, care and health this by enabling them to capture their own own their capture to them enabling by this with communicate to data, care and health their health and manage their care. It may do do may It care. their manage and health their ‘...a digital tool that helps people to maintain maintain to people helps that tool digital ‘...a Royal College Physicians Appendices 1 2 3 4 5 6 7 8 9 10 11 Feedback + Reading

www.pifonline.org.uk www.pifonline.org.uk common identifier, thenevery youinteraction identifier, common be recorded ideally should NHS the with have against your NHS number. that hold health information needs a smartcard, a smartcard, needs information health hold that password. and a username with along vary, systems local access to used Procedures but are many starting to use smartcards. Locating records If your different health and care records are place, one into together be pulled to going of all locate to be a way to needs there then The together. them connect and records your number. NHS an have all we that is grace saving and a unique as used is number NHS your If need, if people are to have PHRs that that PHRs have to are people if need, of all on information together bring their interactions with health and care We service. identity a national is services, Smith Jane that be sure to a way need Jane actually is Street High the from right the access can she that and Smith, records andJane no-one Smith’s else’s.’ Cambouropoulos Peter an point, some at have, to critical is ‘It a patient allow will that service identity to connect their on line identity with patient, One services. care and health credentials. login of set one identity, one password and name be a user may This of be biometric will this soon but now, for some sort.’ Adrian Byrne ‘One of the most important things we we things important most the of ‘One . GOV.UK Verify GOV.UK

Technical considerations Technical Appendix B Appendix

Appendix B: B: Appendix

Page 65 Page staff who is given access to national systems systems national to access given is who staff PHRs, must be verified too. Any member of member Any too. be verified must PHRs, and anyone else who accesses information in in information accesses who else anyone and The identity of health and care professionals, professionals, care and health of identity The approach more along the lines of along lines the more approach multiple service providers, may require an vary. For patients to have access to a wider set set a wider to access have to patients For vary. from together gathered records, joined-up of Procedures used to access hospital records records hospital access to used Procedures you need to keep secret. secret. keep to need you give you login details and a password, which which a password, and details login you give containing a photo. Your GP practice will then then will practice GP Your a photo. containing and take two forms of ID into the surgery, one one surgery, the into ID of two forms take and will normally ask you to fill in a short form shortform in a fill to you ask normally will To gain access to your GP records, your practice practice your records, GP your to access gain To NHS and social care staff create aboutyou. identity – to confirm that you are who you say say you who are you that confirm – to identity that records health access to are you – if are you It’s important to have a way to verify your your verify to a way have to important It’s identity Knock knock, who’s there? Verifying Knock knock, there? who’s Appendices 1 2 3 4 5 6 7 8 9 10 11 Feedback + Reading www.pifonline.org.uk www.pifonline.org.uk ‘Interoperability be should in built regional and start. Local the from efforts interoperability to promote and data sharing, which are be should fruit, bear to beginning built upon. National standards for be should interoperability developed of expectation an with enforced, and of core interoperability widespread 2020.’ by elements data flourish, with the goal of promoting promoting of goal the with flourish, one any having avoiding and innovation for Plans market. the dominate vendor interoperability should be harmonised up join to efforts ongoing other with care social and health the of elements by represented those as such systems, the Sustainability and Transformation (STPs).’ Plans 52

www.interopen.org and interfaces should enable a mixed a mixed enable should interfaces and to providers system IT of ecosystem Technology to Improve Care in England’ Improve to Technology a Core as Interoperability Ensure ‘9. Digital NHS the of Characteristic Care, Clinical Promote – to Ecosystem and Research’ Innovation, should NHS the digitise to ‘The effort new interoperability. widespread guarantee to are interoperability of goals The enable seamless care delivery across traditional organisational boundaries, access can patients that ensure to and and, record clinical parts their of all over time, import information into it. Widespread interoperability will require and enforcement development the of standards, along with penalties others and GPs, trusts, suppliers, for appropriate of way the in stand who data sharing. The system, standards, Recommendation on interoperabilityRecommendation from ‘Making Information IT Harnessing Work: Technical considerations Technical Appendix B Appendix 51

Department of Health. Making IT Work: Harnessing Information Improve Care Technology to in England. Sept 2016 INTEROPen are an open collaborative and action group, made up of organisations and individuals, aiming accelerate to www.gov.uk/government/publications/using-information-technology-to-improve-the-nhs the development of open standards for interoperability in the health and care sector.

Appendix B: Appendix Page 66 Page 52

51 each person when and where that’s needed. needed. that’s where and when person each provides a comprehensive picture about a comprehensive provides consistent, coherent shared electronic record that care social and health across system for good care records, to help to create a create to help to records, care good for professionals to define standards needed define to standards professionals (PPRSB) is working with the public and and public the with working is (PPRSB) The Professional Records Standards Body is vital. talk to each other - therefore interoperability interoperability - therefore other each to talk if we are to transfer and share data between to be able to need systems those systems, place for you to see them all in one place, but but place, one in all them see to you for place Your records don’t have to be stored in one one in be stored to have don’t records Your Interoperability Appendices 1 2 3 4 5 6 7 8 9 10 11 Feedback + Reading www.pifonline.org.uk www.pifonline.org.uk question surrounds where hold you the question surrounds feasible, and desirable, more it Is data. and places different in data the hold to together all it bring to or it, exchange seems It place? one in all it hold and point a technical from both easier, far and interoperability regards as view of system each if consent, for and security, be can’t data that and data its holds still can You systems. other by updated a gives that data of set a bigger see fuller picture sets viewing different by actually they’re if even together data of want might People separately. held held that’s content on comment to of course.’ though, elsewhere Richard Pantlin ‘From a technical point of view, one one view, of point a technical ‘From 53 systems.hscic.gov.uk/hscn/about Technical considerations Technical Appendix B Appendix

NHS Digital. About HSCN.

Appendix B: Appendix Page 67 Page

53 as well as access to national, regional and and regional national, to access as well as locally applications. hosted services, flexible and remote working patterns patterns working remote and flexible services, enable the integration of health and social care care social and health of integration the enable to health and social care organisations, to to organisations, care social and health to network that will enable multiple suppliers suppliers multiple enable will that network network interoperable provide to services provide a successor to N3, a standards-based a standards-based N3, to a successor provide and Social Care Network programme will will programme Network Care Social and deliver sensitive healthcare data. The Health infrastructure we need to securely and safely safely and securely to need we infrastructure N3, which is a secure encrypted network for for network encrypted a secure is which N3, the rails, and roads the It’s data. transferring secure network. There’s already a system called called a system already There’s network. secure To transfer and share data, we also need a need also we data, share and transfer To A secure network A secure Appendices 1 2 3 4 5 6 7 8 9 10 11 Feedback + Reading www.pifonline.org.uk www.pifonline.org.uk

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Summary records for emergency care as known (previously GP Record Welsh - IHR) Record Health Individual the doctors out-of-hours 2009, Since a view to able been have Wales in record medical a patient’s of summary GP. their by held the to access extend to place in are Plans GP record to:

, published , published National plans for PHRs in Wales, Scotland and Northern and Scotland Ireland Wales, in PHRs for plans National

Welsh Government (2015) Our (2015) Government Welsh . Appendix C Appendix

Appendix C: C: Appendix

Page 68 Page people of Wales. and greater access to information will help help will information to access greater and the of well-being and health the improve in December 2015, outlines technology technology outlines 2015, December in and Social Care Strategy for Wales for Strategy Care Social and Informed Health and Care - A Digital Health March 2018 plan for a primary care service for Wales up to up Wales for service care a primary for plan and information. Further details on this can can this on details Further information. and in be found or admissions, including discharge advice advice discharge including or admissions, information from their hospital appointments their GP-held health records with clinical to include online access for people to to people for access online include to in the GP practice electronic system by April April by system electronic practice GP the in developed be further will service The 2017. with online access to their information held held information their to access online with Wales is committed to providing citizens citizens providing to committed is Wales rolled out to all GPs in Wales. in GPs all to out rolled repeat prescriptions. This service has been been has service This prescriptions. repeat service to book GP appointments or request request or appointments GP book to service Patients can use the My Health Online (MHOL) (MHOL) Online Health My the use can Patients access National progress on records records on progress National Wales Wales Appendices 1 2 3 4 5 6 7 8 9 10 11 Feedback + Reading

Health and www.pifonline.org.uk www.pifonline.org.uk : delivering together, a report together, : delivering and on getting beyond organisational and and on getting organisational beyond professional silos. range the ‘expand to reportThe commits to available and interaction of information citizens, service users and those providing This apps. through and online both services will include building a new patient portal their to access online secure allow will which where information care and health own portal patient new This this. want users service next patients dementia for place be in will 2021.’ North by the across out rolled and year Northern Ireland Health of Department the 2016 October In for Northern Ireland published Wellbeing 2016 in healthcare of vision a future out setting Northern Ireland. and care, and eHealth reportThe discusses technology of use better make to ambitions model a healthcare deliver to data and focused on service users, on improving the population, the of wellbeing and health

for patients .’ National Conversation on Conversation National ‘The future of patient access patient of ‘The future given at the BCS Health Informatics Informatics Health BCS the at given We’re promoting the development of development the promoting We’re Primary Care Digital Services Services a Digital into investing by next the three over Fund Development years.

our 5.3 million citizens. If you have any views views any have you If citizens. million 5.3 our make please better, be done can this how on the join you sure ‘Creating a Healthier Scotland’ Eventually, we are hoping to bring these these bring to hoping are we Eventually, strands together through a patient portal. my in above the about more out find can You on presentation in Services and Records Health Electronic to Scotland’ Conference… Realising this approach means bringing territorial 14 has Scotland together. people health boards, 7 special health boards, 32 practices. general 996 and authorities local implementing in play to a role have all These local or a regional on strategy national our of, benefit the for and with, together basis

and NHS Inform PatientView and The-digital-way-to- : NHS24 . These provide digital tools tools digital provide These . National plans for PHRs in Wales, Scotland and Northern and Scotland Ireland Wales, in PHRs for plans National Appendix C Appendix

themselves to effective to and themselves self-management co-production with clinicians. for chronic conditions such as as such conditions for chronic MyDiabetesMyWay best which lend conditions with for patients We’re consolidating and extending our consolidating We’re portfolio platforms patient of comprehensive we’re alreadywe’re providing. This is happening in close cooperation with patient organisations. websites will soon be refreshed to improve improve to be refreshed soon will websites on-linethe and information self-care guides electronic patient record) and baseline baseline and record) patient electronic In 2020. by citizen each to available services the meantime, the We’re aiming personalised to make We’re health information (including a summarised

Appendix C: Appendix Page 69 Page

patient-empowerment Scotland in a blog about about a blog in Scotland eHealth Division, explains what’s happening in Pieter van de Graaf, Clinical Strategy Lead, SG SG Lead, Strategy Clinical Graaf, de van Pieter Scotland we’re currently taking a multi-track strategic strategic a multi-track taking currently we’re approach in Scotland: with patient-facing health IT developments, developments, IT health patient-facing with ‘To ensure we substantial make progress‘To Appendices 1 2 3 4 5 6 7 8 9 10 11 Feedback + Reading

stated that Workstream www.pifonline.org.uk www.pifonline.org.uk 54 set out plans to make it easier for the the for easier it make to plans out set ‘The Power of Information’ all general practices will be expected to be expected to will practices general all make available electronic booking and cancelling of appointments, requesting of repeat prescriptions, viewing of test results, communication with the practice and access to records access, online secure have will patients NHS all records. GP personal their to it, want they if

able to access their own GP electronic record record electronic GP own their access to able their of a summary just not seeing full, in online allergies and medication but blood test results, appointment records and medical histories. By this record will include information2018 from 2020, By interactions. care and health their all the at be ‘paper-free to committed has NHS the point of care’. There will be a staged approach to electronic electronic to approach be a staged will There be should patients all 2016 - by records health The National Information Board’s Roadmaps by information care and health access to public improving digital services. Information (DH) Health of Department The Strategy by 2015: on these standards and how they should should they how and standards these on be ‘hard-wired’ commissioning into and regulatory oversight.’ framework prioritises comprehensive comprehensive prioritises framework to individuals for ability the – with access 2018. by – records own their to add […] All patient and care records will be digital, By 2020. by interoperable and real-time and urgent primary, in clinicians 2018 emergency care and other transitions key without be operating will contexts care of will This records. paper use to needing national of alignment by be achieved technical and professional data standards with regulatory and commissioning building onrequirements. By April 2015, the existing interoperability programme, users with partnership in NIB, the and industry bodies, including the NHS the and Network Trust Foundation Confederation, will coordinate agreement to edit the entries their clinician has made made has clinician their entries the edit to This be visible. will comments their but

Personalised makes a makes Policy drivers and government initiatives in England initiatives government and drivers Policy defines the online services theonline defines Appendix D Appendix

Five Year Forward View Year Five GP contract sources, like wearable devices, can be can devices, wearable like sources, ability the have won’t Patients included. ability to ‘write’ into it so that their own own their that so it into ‘write’ to ability preferences and data from other relevant it is essential that citizens have access to to access have citizens that essential is it the and care, and health in data their all to their GP records and will be able to to be able will and records GP their to apps through data that of copies view But choice. their of platforms digital and ‘In 2015, all citizens will have online access access online have will citizens all 2015, ‘In

researchbriefings.parliament.uk/ResearchBriefing/Summary/CBP-7572 House of Commons Library. Briefing paper Number 07572, 25 April 2016 A Housepaperless of Commons Library. NHS: electronic Briefing 25 April2016 paper health Number07572, records.

Appendix D: D: Appendix Page 70 Page

interoperable and real-time by 2020’. The The 2020’. by real-time and interoperable framework states: that ‘all patient and care records will be digital, be digital, will records care and patient ‘all that Patients and Citizens: A Framework for Action A Framework and Citizens: Patients Technology to Transform Outcomes for Outcomes Transform to Technology Health and Care 2020: Using Data and Data Using 2020: Care and Health The government committed in in committed government The patient’s records are paperless’. commitment that, by 2020, there will be ‘fully be ‘fully will there 2020, by that, commitment interoperable electronic health records so that The that GPs are required to provide to patients. to provide to required are GPs that The Appendices 1 2 3 4 5 6 7 8 9 10 11 Feedback + Reading www.pifonline.org.uk www.pifonline.org.uk

, GP Connect , and the the , and Vanguard sites Vanguard , which aims to support better better support to aims , which integrated care pioneers care integrated programme and information up opening by care clinical use for systems IT Practice GP within held data across health and social care. Also of relevance are and models, care new exploring are which ,

. , due , due was ‘LDRfootprints’ Test Beds Policy drivers and government initiatives in England initiatives government and drivers Policy ‘Digital Maturity Self-assessment’ Appendix D Appendix

’Local Digital Roadmaps(LDRs)’

Appendix D: Appendix Page 71 Page

their local populations. adopt and adapt to the particular needs of of needs particular the to adapt and adopt home. Successful innovations will then be then will innovations Successful home. to country parts the of other for available and monitor their conditions themselves at at themselves conditions their and monitor of working, which will help patients stay well well stay patients help will which working, of as wearable monitors, data analysis and ways ways and analysis data monitors, wearable as combinations of interconnected devices such such devices of interconnected combinations health and care workers in seven areas areas seven in workers care and health novel of use the evaluate and pioneer will Simon Stevens in January 2016. Frontline Frontline 2016. January in Stevens Simon announced by NHS England Chief Executive The first wave of seven seven of wave first The ‘Sustainability and Plans’ Transformation the broader context of what are called called are what of context broader the achieve the ambition of ‘paper-free at the the at ‘paper-free of ambition the achieve within falls work This 2020. by care’ of point by 30 June 2016, setting out how they will will they how out setting 2016, June 30 by and completed a completed and social care partners. Each has already already has Each partners. care social and organised what into are called providers local commissioners, include which Local health and care systems have been been have systems care and health Local Appendices 1 2 3 4 5 6 7 8 9 10 11 Feedback + Reading 56 www.pifonline.org.uk www.pifonline.org.uk services has changed over time.’ over changed has services Instant to personal access health records online - inspired by the ‘blue NHS. new the US, the in - app button’* to patients enable also will site UK securely download their personal health to access instant them giving records, important healthcare information, such as prescriptions and test results. about information local interactive, More – services health of performance the will website MyNHS the today, from services NHS how on data better give are performing across dementia, diabetes and learning disability services. data health mental and cancer Maternity, the future, In year. this later follow will maps, include also will site revamped can patients that so tools and graphs local their of performance the how see

book appointments, and order and track track and order and appointments, book prescriptions. online and get tailored advice or and get a advice tailored call- online back from a healthcare professional is service The needs. their to according being developed with leading clinicians best the ensure to piloted then and outcomes. patient guide to apps health NHS-approved launch will England – NHS choice patient well as apps, assessed NHS of a library devices, wearable other on advising as select reputable can people ensure to and effective productsand to monitor improve their health. website Choices NHS the of A relaunch will - it services of range the improve to a fuller with NHS.UK as be relaunched services, range patient of online including and see a GP, with register to ability the

www.healthit.gov/patients-families/blue-button/about-blue-button

55 announced Making IT work: Harnessing Harnessing work: IT Making Policy drivers and government initiatives in England initiatives government and drivers Policy ), suggests that a more realistic realistic a more that suggests ), Appendix D Appendix to achieve ‘NHS digital excellence’ excellence’ digital ‘NHS achieve to include a new online ‘triage’ service for for service ‘triage’ online a new include will – this problems health serious less symptoms their enter to enable patients ‘The expansion of the existing NHS 111 111 NHS existing the of ‘The expansion non-emergency phone service line to

digital servicesdigital for as outlined patients, follows: that include 12 new examplars’ ‘global that include (NHS 12 pioneer best that practice), organisations new and skills digital in staff NHS training Health Secretary Jeremy Hunt plans digitised by 2023 rather than 2020. than rather 2023 by digitised the review, Wachter the to Responding in England made are funds sufficient if expectation, be should NHS entire the that is available, Robert Wachter ( Robert Wachter information technology to improve care Latest developments – the Wachter review Wachter – the developments Latest by chaired review, independent A recent Department of Health. Making IT Work: Harnessing Information Improve Care Technology to in England. Sept 2016 HealthIT.gov. Your health records. About Your blue button.HealthIT.gov.

56 55 Appendix D: Appendix

Page 72 Page * In the US, the ‘blue button’ symbol signifies that a site has functionality for customers to go online and download health records. health download and online go to customers for functionality has site a that signifies symbol button’ ‘blue the US, the * In Appendices 1 2 3 4 5 6 7 8 9 10 11 Feedback + Reading www.pifonline.org.uk www.pifonline.org.uk Summary Care Records Summary Care

Appendix E Appendix

Appendix E: E: Appendix Page 73 Page health conditions, personal about preferences conditions, health your care and communication needs. your care, such as information on any long-term long-term any on information as such care, your to your SCR if you think that will help improve improve help will that think you if SCR your to can ask your GP to add additional information information additional add to GP your ask can You can’t access your SCR online yourself, but you you but yourself, online SCR your access can’t You you are admitted for urgent care in hospital. in care urgent for admitted are you information they wouldn’t otherwise have if, for if, otherwise wouldn’t they have information or Emergency and Accident visit you example, Your SCR provides healthcare professionals withYour you’ve had to certain medicines. certain to had you’ve taking, allergies you’ve got and bad reactions reactions bad and got you’ve allergies taking, date of birth, NHS number, medicines you’re you’re medicines number, NHS birth, of date from your GP practice on your name, address, address, name, your on practice GP your from having one. Your SCR contains key information information key contains SCR Your one. having you should have what’s called a ‘Summary Care Care a ‘Summary called what’s have should you of out opt to chosen you’ve unless (SCR)’, Record If you’re registered with a GP practice in England, England, in practice a GP with registered you’re If + Reading 1 2 3 4 5 6 7 8 9 10 11 Feedback Appendices www.pifonline.org.uk www.pifonline.org.uk

2016 , ‘Personal Health ‘Guide to Health , 2012 ‘Patient Engagement Engagement ‘Patient , 2016 ‘Making IT Work: , 2016 ‘Personal Health Records: , 2013 ‘Delivering the benefitsof Children’s Digital Health Children’s systems.hscic.gov.uk/infogov/iga , 2016. NHS England, Strategy and care 2020health.org, Putting patients incontrol?’ Trust, Nuffield digital health care’ Health for Coordinator National the of Office Technology, Information Playbook’ Forum, Information Patient Records Access’ Physicians, of College Royal Record Landscape (PHR) Review’ National Advisory Group on Health Information in Technology England, chaired Robertby Wachter, to Technology Information Harnessing Improve Care in England’ The IGA provides advice, guidance and and guidance advice, provides IGA The health in support governance on information . elearning. andfor .

www.england.nhs.uk/ourwork/

Further reading Further www.local.gov.uk/chip/-/journal_

Further reading Further Page 74 Page content/56/10180/7618132/ARTICLE managers as social care informatics leads and web web and leads informatics care social as digital adoption’ for senior managers with with for managers senior adoption’ digital well as engagement public for responsibility ‘Engaging Citizens Online: briefings to support to briefings Online: Citizens ‘Engaging of IT Management (Socitm) has produced produced has (Socitm) Management IT of Social Services (ADASS) and the Society Society the and (ADASS) Services Social The Local Government Association (LGA), (LGA), Association Government Local The Adult of Directors of Association the rcgp.org.uk/mod/page/view.php?id=4709 the Royal College of General Practitioners to to Practitioners General of College Royal the materials: training further develop The Patient Online team has also worked with with worked also has team Online Patient The pe/patient-online professionals online/about-the-prog/po-public www.england.nhs.uk/ourwork/pe/patient- They’ve produced guidance for the public public the for guidance produced They’ve is designed to support GP practices to offer offer to practices GP support to designed is patients. to services online promote and NHS Online Patient England’s programme