Scoping the Priorities for Quality in the Health and Disability Sector - Chapter 7

Chapter 7

A National Programme for Improving Consumer Participation Scoping the Priorities for Quality in the Health and Disability Sector

Introduction

This chapter discusses the process and programme to be implemented in the NZ health and disability sector to implement a strategy for improving consumer participation in health care in District Health Boards (DHBs) over the next three years.

The development and implementation of a strategy for improving consumer participation in health care will focus on four initiatives: . Establishment of a National Health Consumer Entity . MOH policy and guideline development for consumer involvement . DHB self assessment, training and development of a plan for consumer participation . Consumer representative training.

Approach The strategy for improving consumer participation in health care has been developed through the following process steps:  A review of current published and grey literature that relates to the priority area  Collection of evidence of effective strategies for improvement in the priority area  Consultation with experts in the priority area  Analysis of research and consultations  Development of a draft scope  High level costing exercise  Development of a high level implementation plan.

Prepared by: Communio Page 2 of 30 Consumer Participation Scoping the Priorities for Quality in the Health and Disability Sector

Definitions Citizen used Citizen is a term to denote members of the public in relationship to the state, in nation or other political entity. Because citizenship confers democratic rights, this the term citizen implies status, responsibility and the ability to have a say. chap ter1 Community Community is used to describe populations, people living in particular geographical locations, people with a ‘community of interest’, or more loosely as the public sector.

Consumer The term ‘consumer’ includes all people who use, or could potentially use, a health service. Included in this definition are patients, clients, families and caregivers.

Consumer organisation Consumer organisation is a group made up of consumers of health services whose main objectives are to work together to support its members and represent their views, and which is independent of professional, commercial and government interests in its decision making. Consumer organisations include self-help groups and advocacy organisations that may be organised around a specific disease, a specific health service or concerns about the health system overall. They may be active from local through to national levels.

Participation "The term 'participation' usually implies more sharing, not only of information and opinion, but also of decision making power. Real participation means joint problem solving, joint decision-making, joint responsibility." Consumer participation in health is about people who use health services and who have a say about how their own health is maintained and how health services are provided to them and others. Consumers speak from their experiences of health systems and when they are able to offer views based on experience it becomes the “consumer perspective”.

1 http://www.participateinhealth.org.au/

Background

Introduction Consumer Participation is a process of involving consumers in decision making about health service planning, policy development, setting priorities and highlighting quality issues in the delivery of health services. There is now evidence to show that where there is consumer participation in activities relating to the delivery and planning of health care for example, then there is a demonstrable improvement in the quality and safety of health care.

Patients and the wider community have largely been passive observers of the significant changes in health care over the last three decades with the result that many patients still do not fully participate in decisions about their health care. Nor have they been involved in discussions about the best way to deliver health services. The current clinician-centred and disease focussed model emphasises professional and organisational domains without consideration of the patients who are at the receiving end of health care. There is now an increasing trend for health care consumers to be at the centre of care; not at the receiving end of care.

DHBs are governed by the NZ Public Health and Disability Act 2000 which states that DHBs must “foster community participation in health improvement, and in planning for the provision of services and for significant changes to the provision of services” 2 and “As soon as reasonably practicable after proposing a significant change to policies, outputs, or funding for outputs stated in its most recent annual plan, a DHB must consult its resident population about the proposed change”3.

It is perceived that consumer participation is a dimension of quality that requires significant focus in NZ, because as the evidence indicates, there is a huge opportunity to improve health outcomes through consumer participation.

2 32 PART 3 — DISTRICT HEALTH BOARDS, 22.Objectives of DHBs PART 3 — DISTRICT HEALTH BOARDS, 40.Consultation on proposed changes to annual plan

Why is this In many countries, there are strong social, political and health reasons why prio governments and health professionals are responding to consumers' requests rity to be more involved in the wide range of decisions that need to be made about imp their health care, from individual through to system-wide levels. This is orta driven by several factors: nt? . Many health care consumers now consider it their right that they be included in various decision-making processes and that they are provided with information and other resources that enables them to participate. . There is also growing interest and evidence in the link between consumer participation activities and improvement in the quality and safety of health care. Studies provide compelling support for the value of consumer participation in individual care, health service development and policy development for the broader health system.4 This can be quantified according to a number of dimensions of consumer participation; at an individual consumer level, at health service level and at the wider health system level.

1. Consumer participation in individual care There is a growing recognition that consumers have enormous potential to influence their own health outcomes if they are involved actively in shared decision-making and provided with quality information and appropriate self- management tools. Improved health outcomes for people with chronic diseases benefit significantly from involvement when consumers become full partners with their health care providers because not only it is their right, but also because health care is delivered more effectively and efficiently if this occurs.

Unfortunately, NZ research shows that even the best intended health professionals attempting to create an integrated, consumer centred plan often fail to take account of consumer priorities. A NZ project conducted on a group of older people and the information they provided to assist health professionals in planning their care (Mahony) demonstrates this gap.5 The study participants completed a questionnaire measuring self-reported quality of life and were asked to complete a self-assessment booklet. They identified an average of 9 issues/problems each and on average took 13 different medications per day. Participants were asked to identify their own goals and priorities for health improvement. It was found that: . Only 52% of issues the patient had identified as important were even discussed at the planning meeting by the health professionals . Only 35% of issues the patient had identified as being important were included in the planned interventions . Only 14% of issues the patient had identified as important were actioned during the intervention phase.

4 The evidence supporting consumer participation in health, Consumer Focus Collaboration, 2001, Australia 5 Older people as the Centre of their Care and Services, Mahony, F., Clinical Leaders Association, 2001, Auckland

Why is this On the other hand, active participation of consumers in care can make a prio dramatic difference to outcomes. rity imp Another example, acting on the conclusions from a Cochrane systematic orta review Lahdensuo,6 found strong evidence that when adults with asthma are nt?, active participants in their care, undergo self management education, and are cont. supported by written action plans, they have reduced hospital admissions, emergency room visits, unscheduled visits to the doctor, days off work or school, and nocturnal asthma. The cost effectiveness studies have shown that approximately $11.22 can be saved for every $1 spent.

2. Consumer Participation in Health Services In general, a service designed and delivered with an understanding of the views and needs of those who are to use it is more likely to effectively target these needs. It follows that involvement of consumers in health service planning, delivery, monitoring and evaluation is likely to result in services which are more accessible and appropriate to service users.

For example, in New Zealand in 1991, asthma clinics were established within a partnership framework, which involved significant Maori management. Initial studies7 showed that there was a reduction in asthma morbidity amongst Maori people. A further study was conducted to assess whether the long-term benefits of the partnership program extended beyond reduced asthma morbidity and the extent to which any additional benefits may be related to the partnership approach employed by the program. The program was found to have four key benefits: cultural affirmation; improved access to other health services; a greater sense of control for participants; and positive impacts on the extended family.

3. Consumer Participation in the Health System NZ and Australia have had great success in the development and implementation of several National health strategies and policies. Consumer participation has been integral to the success of these and has occurred at many different levels utilising a range of methods.

The following examples relate to the benefits of consumer participation in two major health system initiatives. a) Consumer led reform has been a keystone in the implementation of the National Mental Health Strategy. There is no doubt that consumer and carer participation and partnership in the design and delivery of mental health services helps ensure more responsive providers, better quality care and more empowered clients. b) The Australian response to HIV and AIDS is internationally recognised for its success in controlling the spread of HIV and minimising the impacts of disease.

6 76 Guided self management of asthma-how to do it’ Lahdensuo, A., 1999, British Medical Journal,319:759-760, United Kingdom Ratima, M., Fox, C., Fox, B., Te Karu, H., Gemmell, T., Slater, T., D’Souza, W., & Pearce, N., 1999, ‘Long-term benefits for Maori of an asthma self-management program in a Maori community which takes a partnership approach’, Australia and New Zealand Journal of Public Health,23:601-5.

Summary of 1. The benefits of individual consumer participation in individual care are: Ben . Active consumer participation in decision-making in individual care leads efits to improvements in health outcomes. of . Access to quality information facilitates decision-making and supports an Con active role for consumers in managing their own health. sum er Part 2. The benefits of consumer participation at a health service level, are: icipa . Active consumer participation leads to more accessible and effective tion health services. . Effective consumer participation in quality improvement and service development activities in health services is achieved through the adoption of a range of methods. . Effective consumer participation uses methods that facilitate participation by those traditionally marginalised by mainstream health services.

3. The benefit of active involvement of consumers at all levels in the development, implementation and evaluation of health strategies and programmes is integral to their success.

In summary, consumer participation can occur across many levels including; . Participation in treatment and care . Consumers employed by services as consultants and advocates . Participation in service delivery and evaluation . Participation in policy and planning . Participation in education and training . Participation in staff recruitment.

Review of international action

Introduction Since the mid-late 1990’s, there has been significant work undertaken to research the benefits of consumer participation and develop methodologies around measurement and inclusion. Most first world countries are endeavouring to establish mechanisms in their health systems which provide for consumer participation at individual, service and policy/system levels.

Review of The research on consumer participation is an emerging area and hence the litera literature is modest in terms of the number of studies and the range of ture methodologies. The reported research does not often use methodologies such as randomised trials and systematic reviews which are typical of more established research areas in the health field; rather, descriptive studies and process evaluations are more common (as likely to be conducted by consumers themselves). However, there is still much to learn, to review, and to experiment with in order to learn the most effective and desirable ways to involve consumers in their health care.

International Australia is often regarded as the country with the most integrated and strat comprehensive approach to evidence-based consumer participation and egies support for a consumer voice at the national level.8 : Aust The Australian system for consumer involvement has taken a different ralia direction than any other country studied as it provides a strong national framework and evidence-base. The inauguration of the Consumers’ Health Forum of Australia9, supported by the Commonwealth Government, and the funding of national agencies charged with fostering consumer participation with both providers and consumers has legitimated such activities to a degree that has not occurred anywhere else in the world. Participation activities have been mainstreamed and are increasingly embedded in the health sector.

Consumers are seen as having a valid role at all levels of the health system in Australia. Most states have a consumer council, advisory committees on specific issues, such as mental health, and there are rural health councils in many states. A strong evidence-base has been developed for such activities. Consumer involvement is not treated as an add-on or afterthought, but is an integral part of the health sector. Demonstrating an organisational commitment to community participation is a requirement of Australian health service accreditation programmes.

For example, all Metropolitan Health Service Boards in Victoria have a statutory requirement to establish a Community Advisory Committee.10 This is based on an acceptance that consumer participation is a democratic right, promotes social cohesion and improves health care quality and safety. Health care providers can attend meetings by invitation as a resource, but a clear majority at all meetings must be consumer/community members of the committee.

The core accreditation programme for Australian healthcare is the Evaluation and Quality Improvement Program (EQuIP), which guides organisations through a four year cycle of Self-Assessment, Organisation-Wide Survey and Periodic Review to meet the Australian College on Healthcare Standards (ACHS) standards.11 The EQUIP standard on consumer participation is due to be introduced in 2007 upon which all Australian health care providers will be assessed with respect to the extent of their consumer involvemnt.

8 Effective Consumer Voice and Participation for New Zealand: A Systematic Review of the Evidence, Sandra Coney for the NZ Guidelines Group, 2004, New Zealand 9 http://www.chf.org.au 10 http://www.health.vic.gov.au/consumer/ 11 http://www.achs.org.au/overofproductsandser/

International More than any other country, the UK has attempted to involve the public, as strat citizens and as patients, in health care decision-making. What distinguishes egies the UK system is its top-down, nationalised approach, requiring local trusts, : consumer organizations and communities to fit in to a prescribed approach. Unit ed Patient and citizen involvement are central to the most recent NHS reforms King dom and modernisation process. The reforms build on earlier policies that emphasised the importance of involving patients and the public in decision- making about the shape of services they receive. The Inquiry into the Bristol Royal Infirmary gave additional impetus to these developments, in a similar way that the Cervical Cancer Inquiry led to reforms in patients’ rights in New Zealand. The recent UK reforms, brought in by the Health and Social Care Act 2001, are designed to integrate the views of patients and citizens through every level of the NHS, bringing the patient voice ‘inside’ the NHS.

Four recent examples of individual consumer-focused innovations are: . Expert Patients Programme12 (EPP: provides opportunities for people with long-term chronic health conditions ‘to take effective control over life with a chronic condition’) . Complaints Advocacy Service (CAS) . Patient Advice and Liaison Service (PALS) . Providing choices for patients in the NHS.

Training for consumer representation is provided by several organisations. The British Heart Foundation started providing training in mid-2003 (called Hearty Voices), it aims to have a nationwide network of trained representatives. One-day training sessions are held in different parts of the UK and there are staff to provide ongoing support, including a National Patient and Carer Conference. The National Consumer Council has a particular focus on health and runs a training programme for consumers and consumer representatives called Stronger Voice13, training over 400 Community Health Council representatives initially.

The Royal College of Physicians of England published in December 2005 the report of a working party to define the nature and role of medical professionalism in modern society.14 They describe medical professionalism in the following way:

Medicine is a vocation in which a doctor’s knowledge, clinical skills, and judgement are put in the service of protecting and restoring human well-being. This purpose is realized through a partnership between patient and doctor, one based on mutual respect, individual responsibility, and appropriate accountability.

The report is only the beginning of an effort to initiate public dialogue about the role of the doctor and other health professions to create a healthier and fairer society. It addresses the central issue of the power relationship between doctor and patient in suggesting that these concepts of medical 12 Expert Patients Programme website: http://test.nhsepp.org 13 Stronger Voice is a toolkit that can be used by local trainers, who undergo an induction course and are licensed. More information is available on the National Consumer Council website: www.ncc.org.uk/SV_Main/index.htm. 14 Doctors in society: medical professionalism in a changing world, Report of a Working Party of the Royal College of Physicians of London, 2005, United Kingdom

International There is no national body for health and disability consumers in Canada, strat although some major groups are currently discussing this with Health Canada, egies the government health agency. The other relevant government agency is the : Office of Consumer and Patient Involvement (OCAPI). Cana da The Office for Consumer and Public Involvement (OCAPI) is part of the Health Products and Food Branch (HPFB) of Health Canada. The initiative is designed to support and encourage effective public involvement to enable Health Canada to deliver programmes, launch new initiatives and build public trust. OCAPI provides information and opportunities for Canadians to be involved in decision-making regarding priorities, policies and programmes. A Public Advisory Committee has been established to provide advice from a consumer perspective on issues and to provide guidance to OCAPI and the HPFB related to planning and managing public involvement activities and to advise on effective communication with the public (committee membership is wider than consumers and includes health professionals etc).

OCAPI and Health Canada have issued a number of valuable documents providing policy and guidance on public involvement. The Public Involvement Framework and Guidelines (Health Canada 2000) give detailed guidelines on the rationale and conceptual framework for public involvement, and details of how to develop and implement a public involvement plan.

International Despite the USA being the home of free markets and consumerism, there is strat no federal mandate for consumer involvement, rather consumer power seems egies to be confined to shopping around for the right health plan. : Unit In this policy vacuum, the two agencies that have made the most progress are ed the Food and Drug Administration (FDA) and the National Cancer Institute State s and this has come about through challenges and protests by breast cancer and HIV/AIDS activists. Apart from this, there does not appear to be a concerted effort to involve consumers at a federal level around consumer participation.

The engagement of consumers by the FDA is credited with transforming criticisms that the agency was too slow in approving drugs for such life- threatening illnesses as AIDS, into ardent supporters for the high levels of protection that the FDA provides. In recent years consumer organisations have defended the FDA against attacks to diminish its powers by the Bush administration and Congress.

International The USA, however does enjoy forms of consumer advocacy that are not strat found in countries such as Australia and the UK. This is through egies organisations that have a national profile and voice and they attract significant : private funding support. They are independent of government and have Unit maintained a position ‘outside’ the system; they use legal avenues and they do ed not position themselves as ongoing participants within the system. They do State s, take part in government hearings (such as the FDA public hearings on cont. pharmaceuticals – there is no equivalent in New Zealand) and committees, but this involvement is balanced by high profile public activism.

Current major issues for consumer organisations in the USA centre around the need for extended or universal healthcare, the role and activities of the pharmaceutical industry, greater federal funding for research and the availability of information about physician and hospital performance.

A particular issue in the USA context is industry funding of consumer organisations. Among disease specific groups, virtually all the bigger ones, and even small ones with a national agenda, are funded by the health industry.

International The Netherlands Government has made support for organisations representing strat the chronically ill one of the cornerstones of its health policy. It aims to egies prevent discrimination against the chronically ill and encourage positive : discrimination. To achieve this it funds a number of consumer organisations. Netherlands Two of the major organisaions are the Netherlands Patient/Consumer Federation (NPCF) and the Dutch Council of the Chronically Ill and Disabled (CG-Council).

The NPCF was founded to work for improved access to and quality of health care, offer information to patients and defend their rights. The group promotes the common interests of patients to government, policy-makers at national, regional and local levels, professionals organisations and health insurance companies. It develops ‘platforms’ of policies with its members.

The CG-Council is an advocacy organisation and works at a high level seeking alliances with sympathetic groups and agencies. The council works more widely than health and takes an active part in national politics in order to influence politicians and ministers. It lobbies through letter writing, lobbying, submissions and taking part in national debates, and through the media it seeks to create ‘a strong, convincing and emancipated image’ of people with disabilities. It negotiates with research institutes and agencies to influence policy and planning at an early stage. There is also a wide range of services, such as training, legal assistance, information line, library, and conference rooms. The council has been credited with putting people with long-term medical conditions on the political agenda. It achieved changes in taxation and payments for drug treatment, and health care is said to have become more responsive to people with long-term conditions. Training for health professionals by consumers has been instituted.

International Patients for Patient Safety, one of six action areas of the World Alliance,15 is strat designed to ensure that the perspective of patients and families, consumers egies and citizens is a central reference point in shaping this important work. It : follows that safety will be improved if patients are included as full partners in WHO reform initiatives, and learning can be used to inform systemic quality and safety improvements. This action area will be led by the patient safety consumer movement. Patients for Patient Safety aims to achieve the following objectives during 2006.  Develop the WHO website16 to inform and invite interested patients and consumers from around the world to become involved in Patients for Patient Safety and to help establish networks with existing initiatives and groups;  Ensure an active consumer perspective in all aspects of the work programme of the World Alliance for Patient Safety and promoting the active involvement of patients and consumers in each of its six action areas. This will be achieved through identifying individuals and organisations interested in the work and already active in patient safety and looking for ways to encourage international networks.  Identify and train a small number of champions to advocate for and support the work of the World Alliance and contribute to greater opportunities for patient involvement in patient safety improvement throughout the world.

15 The Alliance raises awareness and political commitment to improve the safety of care and facilitates the development of patient safety policy and practice in all WHO Member States. Each year, the Alliance delivers a number of programmes covering systemic and technical aspects to improve patient safety around the world. 16 http://www.who.int/patientsafety/patients_for_patient/en/

Progress in the New Zealand Health and Disability Sector

Introduction New Zealand lacks a strong national consumer voice and there is no organised system of networking or sharing information within the sector or for government agencies or providers to engage with consumers (Coney, 2003).

There are currently few national mechanisms whereby Government and health agencies can easily engage with the consumer sector (the Mental Health Commission a notable exception). This has resulted in haphazard communication of opportunities for consumers to participate in health sector decision-making and policy development. There is also duplication of effort as individual agencies establish discrete databases and methods of communication. Existing forums and/or opportunities for consumer participation are fragmented and of varying depth and influence.

Since the early 1990’s, there have been a number of consumer initiatives supported by then, the regional health authorities but most of this seems to have been lost during the restructuring that occurred during the establishment of District Health Boards (DHBs). Key staff left their jobs or were moved into other positions, structures and offices that supported consumer involvement were disbanded resulting in little of this knowledge being transferred to DHBs.

Policy In New Zealand community involvement in health is a very long-standing direc tradition with many major health services initiated from outside government. tives The more recent policy of community involvement began in the 1980s, with or Area Health Boards, and has been in and out of fashion since then, with strat successive major restructurings of the health sector, based on dramatically egies different ideologies about health care delivery. to date Both Australia and the UK have legislation, strategic policy and national guidelines on participation. The New Zealand legislative and strategic framework is patchy and far less rigorous in its application. Champions in government, such as a minister or key government officials, have been identified as an important factor in getting participation off the ground. In New Zealand, the Mental Health Commission and Office for Disability Issues have to some extent played this role, but there is no similar entity in health.

While there are varying degrees of recognition of consumer organisations by government in the mental health and disability sectors, this has not occurred in health where responsibility for participation has been largely devolved to DHBs (and to a lesser extent, to Primary Health Organisations). Elected DHBs are to some extent seen as the mechanism for providing public input into the health system by default.

Policy In 2000 the NZ health sector was restructured into 21 District Health Boards. direc The New Zealand Public Health and Disability Act 2000 provides, under tives Section 22 (1), objectives for DHBs that include: or . ‘to promote the inclusion and participation in society and independence strat of people with disabilities’ egies . ‘to reduce, with a view to eliminating, health outcome disparities between to date, various population groups within NZ by developing and implementing, in cont. consultation with the groups concerned, services and programmes designed to raise their health outcomes to those of other New Zealanders’ . ‘to foster community participation in health improvement, and in planning for the provision of services and for significant changes to the provision of services’. Section 38 (3b) requires DHBs to ‘consult its resident population’ on draft strategic plans or amendments to plans.

The New Zealand Health Strategy (Minister of Health 2000) identifies seven fundamental principles that should be reflected across the health sector including ‘active involvement of consumers and communities at all levels’. The Strategy says that elected membership of DHBs ‘will help ensure . democratic participation in the decision-making process’ but ‘this is not a substitute for community, consumer and provider involvement and participation through other mechanisms’ (p 43). DHBs also have particular obligations to consult with Maori.

The Ministry of Health (MOH) does not have a strong focus on consumer participation and lacks a framework, policy or commitment around consumer participation.17 There have been some initiatives (credentialing - discussed further on) but by and large public participation is seen as having been addressed through elected members of DHBs, requirements for consultation by DHBs and requirements for PHOs. The MOH does from time to time involve consumers in committees and reference groups, however, there is no clear policy for including consumers, so that different government services adopt differing approaches. These include shoulder tapping, referrals from various government databases and registers, selection from nominations following public advertising or request to the sector, or request for a representative from designated organisations.

Many important national committees lack consumer representation at all. Of the eight national committees listed on the MOH website, only one explicitly states it contains consumer representation (New Prescribers Advisory Committee). The National Health Committee includes the CEO of a disability organisation and the National Ethics Committee on Human Assisted Reproduction includes a representative from an infertility society; otherwise there is no consumer representation. The National Screening Unit has a Consumer Reference Group (see below) and other service areas may have consumer representation. Overall, the approach is fragmented.

17 Effective Consumer Voice and Participation for New Zealand: A Systematic Review of the Evidence, Sandra Coney for the NZ Guidelines Group, 2004, New Zealand

Policy EpiQual, in recent advice to the Minister of Health on revising the committee direc Terms of Reference, recommended that a consumer forum be established to tives work in partnership with the committee, to role model the professional- or consumer partnership and to influence all committee deliberations. strat egies The national Mental Health Strategy requires that the MOH involve to date, consumers in policy and planning, that consumers be involved in regional cont. planning, and in the design and purchase of services, and that providers be able to demonstrate the employment of consumers in services (Ministry of Health 1997). Mental Health has led the way in the NZ health and disability sector through well organised consumer groups and formalised processes which have resulted in robust consumer participation around the design of services.

The Primary Health Care Strategy requires PHOs to work with local communities and enrolled populations to ensure services are organised around the needs of communities and to include some members of the communities in their governing bodies.

Another aspect of the regulatory framework that has an influence on consumer participation in New Zealand is the Health and Disability Commissioner Act 1994. This establishes a Commissioner to promote observance of the rights of health and disability services consumers, a national network of independent advocates to assist with low level resolution of complaints and provide a community education role, and to investigate complaints. The Act also provides for the creation of a regulation called the Code of Health and Disability Services Consumers’ Rights. While the Code is principally aimed at an individual consumer’s rights, it creates a national framework and cultural context that gives support to calls for a consumer- centred approach and more effective consumer voice at all levels in the health sector. The Code reinforces that citizens have rights, including the right to a voice, and that consumers should be treated with respect as autonomous human beings.

Currently NZ DHBs and health providers are audited according to the NZ Health and Disability Standards (NZHDS), with further accreditation voluntary. Incorporating the EQUIP standard into the NZHDS would serve to reinforce the consumer voice. Strengthening of consumer participation in individual practitioner credentialing according to the Health Practitioners Competence Assurance Act 2003 would also be advantageous.

DHBs are required to provide a monthly report to the MOH on patient satisfaction (it is voluntary for patients).18 Patients are consistently unhappy with access to parking, hospital meals and communication with health professionals.

18 DHB Hospital Benchmark Report for the Quarter April-June 2006, Ministry of Health, Wellington, New Zealand

Treaty of The special relationship established under the Treaty, between Māori and the Wait Crown, is a guiding principle in the Government's action on health.19 To date, angi the relationship between Māori and decision making and the implementation of health and disability services has been based on the three key principles outlined in the Treaty (derived from the Royal Commission of Social Policy) – Partnership, Participation and Protection.

He Korowai Oranga: The Māori Health Strategy (Minister of Health and Associate Minister of Health 2002a) sets the direction for Māori health development in the health and disability sector for the next five to ten years. The strategy provides a framework for the public sector to take responsibility for the part it plays in supporting the health status of whānau. At the heart of He Korowai Oranga is the achievement of whānau ora, or healthy families.

One of the four pathways for action in the strategy, specifies how the aim of improved whānau ora is to be achieved and that is “Māori participation in the health and disability sector”.

The goal is active participation by Māori at all levels of the health and disability sector in decision-making, planning, development and delivery of health and disability services. This pathway supports Māori provider and workforce development. Active participation by Māori in planning, development and delivery of health and disability services will ensure services are appropriate and effective for Māori.

Results so far Over the past couple of years there have several significant initiatives to progress consumer participation in the health and disability sector; the MOH Credentialling Process and the National Consumers’ Summit. DHB efforts appear to be somewhat variable in focus and implementation (this may be attributable to a limited response to a short survey however). Consumer

1. MOH Credentialling Process The MOH initiative around clinical excellence/quality has attempted to include consumers in credentialling processes at a DHB level. In 2001, a report was prepared for the MOH, Quality Improvement and Audit Section, Personal and Family Health Directorate of the MOH. As a result of this report, in 2002, a reference group containing a number of health and disability consumers was set up to develop an approach to consumer participation in New Zealand health services. The reference group had two goals: develop a toolkit for DHBs, and develop a national resource for participation.

After a number of meetings, a toolkit was issued in 2003. This provides practical guidance for health and disability support services wishing to involve consumers in credentialling. Involving consumers in credentialling has been promoted to the DHBs by the MOH through meetings with Chief Medical Officers and CEOs, sector meetings, and the use of ‘champions’. It is now a requirement in letters of expectation from the Minister to the DHBs

19 http://www.maorihealth.govt.nz/MoH

Results so far, and in the Operational Policy Framework, part of the Crown Funding cont. Agreement. Consumer representatives are trained on the job and so far there is only informal networking between them.

The second task of the reference group – to establish a national consumer resource – was not progressed. The Quality and Audit team in the MOH had hoped to move the consumer participation project beyond credentialling, but there has not been support for it to do so within Government.

2. National Consumers’ Summit In October 2005, 200 consumers representing a broad range of health and disability consumer groups and community-based organisations from all over Aotearoa attended a national consumer summit hosted by the NZ Guidelines Group (NZGG). They came together to discuss and determine a way forward at a national level that would strengthen consumer voice and enable more effective consumer participation in New Zealand.

This was the first time that an event of this nature had been held in New Zealand where consumers representing Maori and Pacific communities, the deaf and the blind communities, disability groups, mental health consumers, women’s health and health advocacy groups, older people, children and young people as well as disease/disorder specific groups all came together to identify a way forward.

The summit was organised following a commissioned evidence-based report written by Sandra Coney (this report is referenced extensively in this chapter). The report was commissioned as part of NZGGs commitment to working in partnership with consumers and identifying effective ways of doing so. The purpose of this report was to identify ways to strengthen the consumer sector in New Zealand and improve levels of engagement and consumer participation by identifying models and approaches that could be of value both nationally and internationally. At the end of the day, the following four remits were unanimously passed:20 a) That the meeting supports in principle, the further development of a national consumer entity to be developed by the planning group b) That the planning group develop a discussion paper taking into account the concerns and issues raised at the meeting and others that will be forwarded to it. The discussion paper will cover structural models with advantages and disadvantages. c) The paper with draft terms of reference, will be circulated to participants as a basis for them to discuss with their constituencies. d) Following this, the planning group will seek to organise a further meeting to take the kaupapa21 forward. The group will also explore sources of funding for the initiative.

20 http://www.nzgg.org.nz/index.cfm?fuseaction=specialfocus&fusesubaction 21 Definition: vision, philosophy, cause, idea or theme

Results so far, Cross sector work is now underway involving the HDC office, MOH, cont. Ministry of Social Development and Ministry of Economic Development. A questionnaire has been sent to summit participants canvassing their views on what a national entity would look like, a summary of results is expected soon. It is desirable that a follow up summit is held to determine the way forward.

3. Consumer Information The most comprehensive information store for consumers is the “Everybody” website which is sponsored by a pharmaceutical company. The website aims to provide useful and accurate consumer health information for New Zealanders including common medical conditions, latest health news and research, finding a health professional or service, and support groups. It does not have information relating to consumer rights and responsibilities ie how to lodge a complaint, advocacy or a policy focus ie how a consumer can “have their say” on health issues.

4. DHB Initiatives A recent survey of DHBs which was undertaken to identify activity that relates to the six priorities for quality has revealed that a number of DHBs are working on various aspects of consumer participation activities. As regards the survey, there appears to be variability in the extent to which it has been initiated.

Strategies that were identified through the survey include:

. Counties Manukau DHB: has undertaken a range of activities; . set up a community panel which meets monthly . appointed consumer representatives on Clinical Board, Clinical Advisory Group, Chronic Care Management Alignment Group and participants in Medical and Allied Health Services Credentialling . appointment of a Community Liaison Manager . extensive community consultation for District Strategic Plan . review of Patient Satisfaction process in 2007 . Northland DHB: has appointed a consumer onto the Clinical Care Review. . Wairarapa DHB : has undertaken; . over 50 meetings with community groups to gain input into design and function of the new hospital resulting in a huge turnout for the public open days . Appointment of Pacific Island Liaison / Community & Public Health.

These survey results do not fully represent the extent of activity in DHBs in consumer involvement but do confirm the need for a national programme in consumer participation methods to drive consistency.

Recommendati Research suggests that consumers view the health sector as powerful and ons difficult to change and that there is some scepticism about participation based on previous experiences, rather consumers believe that by organising collectively, they have the best chance of effecting change. So far in NZ, participation has largely been occurring on terms set by non-consumers.

Going forward, the work that has begun to establish a national entity should be progressed to strengthen the “consumer voice” in NZ.

The international review of literature (Coney, 2003) showed that a national consumer body can carry out a range of functions that are currently not being provided in New Zealand. However, effective participation requires: . government support . strengthening and resourcing of consumer organisations . a system-wide approach in health sector and related agencies . a commitment to acting on results.

Coney acknowledged in her report that at this stage it is not known how Maori would wish to be involved. Maori have rarely organised as consumer groups, preferring to organise as iwi, iwi or locality-based provider groups or community of interest groups, such as women or kohanga reo. There are however options for involvement in a single national consumer group or in consortium or partnership arrangements.

It is recommended that a national consumer body leads and determines the activities associated with effective consumer participation in the NZ health and disability sector.

Prior to the establishment of a national consumer body and in the interests of time, it is recommended that a specific consumer participation strategy is identified and implemented for each of the quality improvement priorities in this report.

The recommended programme scope

Introduction For NZ, there are strong social and political reasons why the government and health professionals should be responding to consumers' requests to be more involved in the wide range of decisions that need to be made about their health care, from individual through to system-wide levels.

Whilst not always explicit or legislated, the intent of NZ policy and legislation ie the Health and Disability Act, is that it is a consumers right to be included in various decision-making processes relating to their health care and that they are provided with information and other resources that enables them to be involved. National health care policies such as the NZ Health Strategy and associated strategies ie the Primary Health Care Strategy, can only be strengthened and become more effective through consumer participation activities, resulting in an improvement in the quality and safety of health care.

It is clear that there is a now a growing awareness, will for change and force of work now being initiated by policy makers, health providers and consumers in the area of participation. This is demonstrated through such plans as establishing a national health and disability quality agenda, implementation of consumer strategies by DHBs and the National Consumers’ Summit. The time is ripe to put a consumer participation programme into action.

Programme The programme should achieve the following objectives22: objec 1. Active consumer participation in decision-making in individual care tives leading to improvements in health outcomes. 2. Access to quality information facilitating decision-making and enabling an active role for consumers in managing their own health. 3. Active consumer participation leading to more accessible and effective health services. 4. Effective consumer participation in quality improvement and service development activities in health services through the adoption of a range of methods. 5. Effective consumer participation that facilitate participation by those traditionally marginalised by mainstream health services. 6. Active involvement of consumers at all levels of the development, implementation and evaluation of health strategies and programs.

22 Modified from the Consumer Focus Collaboration, 2001, Australia

Scope summary The consumer participation programme has two components:

1. The establishment of a national consumer health entity which is a central focal point for consumers and community comprising: . Design and set up of a national entity through a cross sector, multi- agency and consumer collaboration (including a second National Consumers’ Summit) . Governance by a Consumers Health Council . Partnership model for Maori . Government funding . Public access to information on: o Consumer rights and responsibilities o Consumer issues o Consumer groups and representatives o Treatment guidelines and options o Reporting of health service performance

2. The development and delivery of training and education for: . consumer representatives . health professionals (to prepare the ground for effective engagement with consumers)

Exclusions a) The scope of the programme does not include health care workers outside of the DHB sector at this time. This exclusion is for several reasons: . The initial cost and timing associated with implementation. . The opportunity to “test” the benefit of the programme before rolling out to the private sector. . Consideration of any policy changes associated with a national roll- out ie funding of training, accreditation or credentialing requirement.

It should be noted however, that the programme as proposed would be generic to any health care setting.

b) The scope of the programme does not include a measurement tool for consumer participation other than those requirements specified in policy or legislation or as assessed during the accreditation process. This is due to the unavailability of a well structured and accepted measurement system at this time.

National Health In getting started, the support of the Minister of Health and Ministry of Health Cons is an important element in strengthening the voice of consumers nationally. umer Entit There are clear advantages in having a national consumer organisation in y terms of influencing government, promoting consumer issues and negotiating with government on behalf of consumers, and training and education on consumer participation. Additionally, a national consumer organisation provides an efficient and effective means by which government can engage with and involve consumers on key matters. Furthermore, the linkage between research and the consumer voice provides an evidence-base for practices in consumer involvement and improvement in health outcomes.

The Consumers’ Health Forum in Australia provides a model for NZ, especially in terms of roles, structure and membership.

A cross-sector approach which is wider than health consumers will be helpful in gaining support for a national consumer body. Recommended agencies would be the Ministries of Health, Social Development and Economic Development, Office of Health & Disability Commissioner and Mental Health Commission. One of the aforementioned should be identified as the lead agency and tasked with the ongoing operational support of the national consumer organisation. It is proposed that a second National Consumer’s Summit is held, which would be an important step in the continuing engagement of consumers, the design and consultation phase (200 stakeholders attended the first).

Adequate government funding will be required so that the national consumer body can provide comprehensive high quality consumer representation and training and education programmes. Sustainable, ongoing funding is critical to the continuance of consumer organisations and the quality of their work, as well as agencies supporting consumer participation. Commitment in terms of ongoing government support will be essential.

A government website is the recommended form for information access and retrieval. Links from other websites and publications should be rerouted, along with an awareness campaign for the public on the national entity.

DHB & other The goal of consumer participation in health is for organisations to move healt from occasional and passive or reactive involvement to having consumer and h community participation as an integral part of the organisational strategy. provi Participation is a core component of the care process between providers and der consumers23. train ing Education and training for health professionals where the emphasis is very much on creating genuine, ongoing partnerships where all the people involved are acknowledged as having a particular and unique contribution and are respected as equals. There is a growing shift beyond traditional approaches, where involvement often meant consultation that stopped once patients’ views had been obtained. Consumer participation in health care means today means the development of long-term collaborative partnerships between planners, service providers, and consumers (sometimes described as moving from expert advisor to partnership).

Training should aim to provide participants with: . a framework for consumer involvement in the improvement of care . interpersonal, communication and relationship skills that make health professionals aware of power issues, skilled in respectful listening and willing to engage in negotiation with the consumer on the basis of equal power . practical methods that are manageable in everyday practice and that have led to demonstrable improvements in consumers’ experience . any organisational implications that need to be considered.

Note: Interpersonal, communication and relationship skills are of such crucial importance that mandatory training and update might be considered as a condition of the Annual Practising Certificate for all health professionals.

The chapter on Developing Effective Consumer Participation at an Organisational Level in “Toward Clinical Excellence: A toolkit to develop consumer participation in credentialing” would be a very good starting point for the NZ environment.

23 Consumer and Community Participation Self-Assessment Tool for Hospitals

Consumer An effective consumer training programme has complex needs, including Repr selection, training, support, resource development, opportunities to network, esent succession planning and accountability processes. ative Training The role of the consumer representative involves24: . Protecting the interests of consumers, service users and potential service users . Presenting how consumers may think and feel about certain issues . Contributing consumer experiences . Ensuring the committee recognises consumer concerns . Ensuring accountability to consumers . Acting as a watchdog on issues affecting consumers . Providing information about any relevant issues affecting consumers.

24 Guidelines for Consumer Representatives

Consumer The key objectives of any effective training for consumer representatives is Repr that they25: esent . feel valued ative They understand their remit and the value of their role. s(con  use their strengths t) They use the skills and qualities they already have and recognise essential skills they need to develop.  work constructively with others They appreciate and balance the needs of the committees, organisations, consumers and network they work with.  research and prioritise the needs of consumers They identify the real concerns of consumers and prioritise relevant issues.  have confidence They effectively put forward issues in meetings.  think strategically They set realistic goals and plan a future course of action.

There are a number of training packages available which could be tailored to the NZ environment.

It is largely the case that consumer representatives are typically overworked and underpaid. The issue of remuneration for consumer representatives can be difficult for both an organisation and the consumer. It is recommended that the guidelines outlined in “Toward Clinical Excellence: A toolkit to develop consumer participation in credentialing” are adopted.

25 Stronger Voice course programme

Implementation Plan

Method Consumer entity establishment, consumer selection and education and training programmes should be underpinned by; 1. Agreed principles for consumer participation 2. Guidelines for health services and consumers 3. Structured training and education programmes which are likely to be sourced and adapted from those already implemented in Australia and the United Kingdom.

Action required This section details the responsibilities and type of action to be taken at all at levels as follows: level s of 1. The Minister will be responsible for approving this strategy and garnering orga cross sectoral involvement. nisat ion 2. The cross sectoral group will be responsible for establishing the national consumer entity, organising the follow up summit, determining a model for Maori consumer participation and handing over ongoing accountability to the lead agency.

3. The National Consumer entity will be responsible for ongoing operational management, engagement with consumers and stakeholders, and development/delivery of training packages.

Timeframes The overall implementation timeframe for this programme will be three years.

The National Health Consumer entity will be established over an eighteen month period.

The programme will be implemented over two phases: 1. National Health Consumer Entity establishment 2. Development and delivery of training

These two phases will overlap significantly but will contain distinct deliverables.

Jan 2010 Jan 2011 Jan 2012

Phase 1 – Establish National Health Consumer Entity

Phase 2 – Training

References

Articles Guided self management of asthma-how to do it’ Lahdensuo, A., 1999, British Medical Journal,319:759-760, United Kingdom

Long-term benefits for Maori of an asthma self-management program in a Maori community which takes a partnership approach’ Ratima, M., Fox, C., Fox, B., Te Karu, H., Gemmell, T., Slater, T., D’Souza, W., & Pearce, N., 1999, Australia and New Zealand Journal of Public Health,23:601-5, New Zealand

Older people as the Centre of their Care and Services, Mahony, F., Clinical Leaders Association, 2001, Auckland

Stronger Voice course programme, National Consumer Council, United Kingdom http://www.ncc.org.uk/SV_Main/courseprogramme

The evidence supporting consumer participation in health, Consumer Focus Collaboration, 2001, Australia http://www.participateinhealth.org.au/clearinghouse/Docs/evidence.pdf

Legislation New Zealand Public Health and Disability Act 2000 http://rangi.knowledge-basket.co.nz/gpacts/public/text/2000/se/091se22.html

Reports A Guide to Effective Consumer Participation in Mental Health Services, Ministry of Health, 1995, Wellington, New Zealand. http://www.nzgg.org.nz/guidelines/0071/Consumer_Participation.pdf

Consumer and Community Participation Self-Assessment Tool for Hospitals, National Resource Centre for Consumer Participation in Health, 2004, Australia

Doctors in society: medical professionalism in a changing world, Report of a Working Party of the Royal College of Physicians of London, 2005, United Kingdom

A Guide to Effective Consumer Participation in Mental Health Services, Ministry of Health, 1995, Wellington, New Zealand. http://www.nzgg.org.nz/guidelines/0071/Consumer_Participation.pdf

Consumer and Community Participation Self-Assessment Tool for Hospitals, National Resource Centre for Consumer Participation in Health, 2004, Australia

Reports, cont. Doctors in society: medical professionalism in a changing world, Report of a Working Party of the Royal College of Physicians of London, 2005, United Kingdom

Effective Consumer Voice and Participation for New Zealand: A Systematic Review of the Evidence, Sandra Coney for the NZ Guidelines Group, 2004, New Zealand http://www.nzgg.org.nz/guidelines/0086/050511_Consumer_Report_Exec_Summary.pdf

DHB Hospital Benchmark Report for the Quarter April-June 2006, Ministry of Health, Wellington, New Zealand. http://www.MoH.govt.nz/MoH.nsf/pagesmh/5156/$File/dhb-hbi-apr-jun-06.doc

Guidelines for Consumer Representatives, Consumers’ Health Forum of Australia, 2001 http://www.chf.org.au/docs/downloads/237_conrepguidelines.pdf

Toward Clinical Excellence: A toolkit to develop consumer participation in credentialing, Ministry of Health, 2003, Wellington, New Zealand http://nz.communiogroup.com/MoH_spq/MOH%20SPQ%20Projects/Ch%207%20Consumer %20Participation/Resource%20documents/TCEToolkitconsumers.pdf

Websites Consumers Health Forum of Australia is the national voice for health consumers. It helps shape Australia’s health system by representing and involving consumers in health policy and program development. It is an independent member-based non- government organisation funded by the Department of Health and Ageing, membership and specially-funded projects. It provides government and policy makers with a consumer perspective on health issues and balances the view of health care professionals, service providers and industry. http://www.chf.org.au/index.asp

Everybody aims to provide useful and accurate consumer health information for New Zealanders. http://www.everybody.co.nz

Maori Health is a MOH site providing information About Māori Health and highlights the policies, programmes and people Addressing Māori Health. There are introductions to the Māori Health and Disability Providers and those who are significant providers of health and disability services to Māori. There is also an overview of the Māori Health Directorate, information on policies and programmes, Māori Health Statistics, Publications and Media releases. http://www.maorihealth.govt.nz

Ministry of Consumer Affairs primary role is to create an environment that promotes good and accurate information flows between suppliers and consumers so that consumers can transact with confidence. It also provides guidelines for consumer representation nomination by government departments and agencies although they do not apply to DHBs. http://www.consumeraffairs.govt.nz/aboutus/index-new.html

National Consumer Council makes a practical difference to the lives of consumers around the UK, using its insight into consumer needs to advocate change. Working with public service providers, businesses and regulators, and it’s relationship with the Department of Trade and Industry — the main funder — gives them a strong connection within government. NCC conducts rigorous research and policy analysis to investigate key consumer issues, and use this to influence organisations and people that make change happen www.ncc.org.uk

New Zealand Guidelines Group leads a movement towards the delivery of high quality health and disability services throughout New Zealand through a change in culture based on evidence and effectiveness. http://www.nzgg.org.nz

Participate In Health was the website for the National Resource Centre for Consumer Participation in Health and Clearinghouse for information on consumer feedback and participation methodologies, distributed free publications (in print and on the website), maintained a library of resources, was a Centre of Excellence where people can seek advice and assistance to develop, implement and evaluate consumer participation methods and models and a Centre for Research and Special Projects on consumer participation topics. The National Resource Centre for Consumer Participation in Health closed in 2004 but the website continues to be maintained. http://www.participateinhealth.org.au

Prepared by: Communio Page 30 of 30 Consumer Participation