Download Scoping the Priorities for Quality in the Health

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
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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.
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Consumer Participation
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Definitions
used in this
chapter1
Citizen
Citizen is a term to denote members of the public in relationship to the state,
nation or other political entity. Because citizenship confers democratic rights,
the term citizen implies status, responsibility and the ability to have a say.
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/
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Consumer Participation
Scoping the Priorities for Quality in the Health and Disability Sector
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
3
PART 3 — DISTRICT HEALTH BOARDS, 22.Objectives of DHBs
PART 3 — DISTRICT HEALTH BOARDS, 40.Consultation on proposed changes to annual plan
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Why is this
priority
important?
In many countries, there are strong social, political and health reasons why
governments and health professionals are 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. This is
driven by several factors:

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 selfmanagement 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
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Consumer Participation
Scoping the Priorities for Quality in the Health and Disability Sector
Why is this
priority
important?,
cont.
On the other hand, active participation of consumers in care can make a
dramatic difference to outcomes.
Another example, acting on the conclusions from a Cochrane systematic
review Lahdensuo,6 found strong evidence that when adults with asthma are
active participants in their care, undergo self management education, and are
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
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.
7
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Summary of
Benefits of
Consumer
Participation
1. The benefits of individual consumer participation in individual care are:
 Active consumer participation in decision-making in individual care leads
to improvements in health outcomes.
 Access to quality information facilitates decision-making and supports an
active role for consumers in managing their own health.
2. The benefits of consumer participation at a health service level, are:
 Active consumer participation leads to more accessible and effective
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.

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.
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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
literature
The research on consumer participation is an emerging area and hence the
literature is modest in terms of the number of studies and the range of
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.
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International
strategies:
Australia
Australia is often regarded as the country with the most integrated and
comprehensive approach to evidence-based consumer participation and
support for a consumer voice at the national level.8
The Australian system for consumer involvement has taken a different
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
http://www.health.vic.gov.au/consumer/
11
http://www.achs.org.au/overofproductsandser/
10
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International
strategies:
United
Kingdom
More than any other country, the UK has attempted to involve the public, as
citizens and as patients, in health care decision-making. What distinguishes
the UK system is its top-down, nationalised approach, requiring local trusts,
consumer organizations and communities to fit in to a prescribed approach.
Patient and citizen involvement are central to the most recent NHS reforms
and modernisation process. The reforms build on earlier policies that
emphasised the importance of involving patients and the public in decisionmaking 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
professionalism are outmoded and should be abandoned: privilege, mastery,
autonomy and self regulation.
12
Expert Patients Programme website: http://test.nhsepp.org
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International
strategies:
Canada
There is no national body for health and disability consumers in Canada,
although some major groups are currently discussing this with Health Canada,
the government health agency. The other relevant government agency is the
Office of Consumer and Patient Involvement (OCAPI).
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
strategies:
United States
Despite the USA being the home of free markets and consumerism, there is
no federal mandate for consumer involvement, rather consumer power seems
to be confined to shopping around for the right health plan.
In this policy vacuum, the two agencies that have made the most progress are
the Food and Drug Administration (FDA) and the National Cancer Institute
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 lifethreatening 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.
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
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Consumer Participation
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International
strategies:
United States,
cont.
The USA, however does enjoy forms of consumer advocacy that are not
found in countries such as Australia and the UK. This is through
organisations that have a national profile and voice and they attract significant
private funding support. They are independent of government and have
maintained a position ‘outside’ the system; they use legal avenues and they do
not position themselves as ongoing participants within the system. They do
take part in government hearings (such as the FDA public hearings on
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
strategies:
Netherlands
The Netherlands Government has made support for organisations representing
the chronically ill one of the cornerstones of its health policy. It aims to
prevent discrimination against the chronically ill and encourage positive
discrimination. To achieve this it funds a number of consumer organisations.
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.
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International
strategies:
WHO
Patients for Patient Safety, one of six action areas of the World Alliance,15 is
designed to ensure that the perspective of patients and families, consumers
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
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/
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Consumer Participation
Scoping the Priorities for Quality in the Health and Disability Sector
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
directives or
strategies to
date
In New Zealand community involvement in health is a very long-standing
tradition with many major health services initiated from outside government.
The more recent policy of community involvement began in the 1980s, with
Area Health Boards, and has been in and out of fashion since then, with
successive major restructurings of the health sector, based on dramatically
different ideologies about health care delivery.
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.
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Policy
directives or
strategies to
date, cont.
In 2000 the NZ health sector was restructured into 21 District Health Boards.
The New Zealand Public Health and Disability Act 2000 provides, under
Section 22 (1), objectives for DHBs that include:
 ‘to promote the inclusion and participation in society and independence
of people with disabilities’
 ‘to reduce, with a view to eliminating, health outcome disparities between
various population groups within NZ by developing and implementing, in
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
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Policy
directives or
strategies to
date, cont.
EpiQual, in recent advice to the Minister of Health on revising the committee
Terms of Reference, recommended that a consumer forum be established to
work in partnership with the committee, to role model the professionalconsumer partnership and to influence all committee deliberations.
The national Mental Health Strategy requires that the MOH involve
consumers in policy and planning, that consumers be involved in regional
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 consumercentred 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
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Treaty of
Waitangi
The special relationship established under the Treaty, between Māori and the
Crown, is a guiding principle in the Government's action on health.19 To
date, 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
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Results so far,
cont.
and in the Operational Policy Framework, part of the Crown Funding
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
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Results so far,
cont.
Cross sector work is now underway involving the HDC office, MOH,
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.
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Recommendati
ons
Research suggests that consumers view the health sector as powerful and
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.
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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
objectives
The programme should achieve the following objectives22:
1. Active consumer participation in decision-making in individual care
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
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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, multiagency 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 rollout 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.
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National Health
Consumer
Entity
In getting started, the support of the Minister of Health and Ministry of Health
is an important element in strengthening the voice of consumers nationally.
There are clear advantages in having a national consumer organisation in
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.
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DHB & other
health provider
training
The goal of consumer participation in health is for organisations to move
from occasional and passive or reactive involvement to having consumer and
community participation as an integral part of the organisational strategy.
Participation is a core component of the care process between providers and
consumers23.
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
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Consumer
Representative
Training
An effective consumer training programme has complex needs, including
selection, training, support, resource development, opportunities to network,
succession planning and accountability processes.
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
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Consumer
Representatives
(cont)
The key objectives of any effective training for consumer representatives is
that they25:
 feel valued
They understand their remit and the value of their role.
 use their strengths
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
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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
at levels of
organisation
This section details the responsibilities and type of action to be taken at all
levels as follows:
1. The Minister will be responsible for approving this strategy and garnering
cross sectoral involvement.
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
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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
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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
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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 nongovernment 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
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