Health care consumers can participate at several levels, from involvement in their own individual health care, to the planning and review of health services, to input into healthcare policy.

At each of these levels, the degree of participation can vary along a continuum:

(adapted from the Health Issues Centre’s A guide to enhancing consumer and carer participation in Victoria’s Integrated Cancer Services.)i

See What can I do? for ideas for facilitating consumer participation at different levels along the continuum of participation.

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Consumer participation has been shown to lead to improvements in health servicesii, and in health outcomes.iii

Everyone involved can benefit from consumer participation strategies at different stages along the participation continuum and in different contexts.

For example, appropriately involving consumers in conceptualising, writing, designing, reviewing and disseminating health information, no matter what the context, can help make sure it:

• is relevant to readers
• addresses the issues most important to readers
• avoids jargon
• avoids ambiguity, misunderstanding, and miscommunication
• communicates the intended messages adequately and appropriately
• takes into account the health literacy of readers
• is socially and culturally appropriate
• has an appropriate mood and tone
• reaches readers at the most relevant time

and therefore meets the intended goals of the information. iv,v

Consumer and community participation across a range of activities within a health service also reaps a range of benefits. Southern Health, Victoria, lists the following benefitsvi for health services:

• higher quality of services and projects
• higher profile for health services in the community
• gives staff new insights into how people perceive aspects of their care
• enables organisations to set priorities about areas of improvement that matter to consumers and the community
• provides an opportunity for joint problem solving
• greater accountability for public funds
• potential for decreasing expenditure
• likely to lead to fewer complaints and litigation
• greater credibility when lobbying Government.

Benefits for consumers and community representatives:

• increased control over their health status and disease management
• improved health outcomes
• increased understanding of health issues and health services
• greater sense of influence over the health services they use
• opportunity to have positive input to local health activities.

For more about consumer participation, see the information regarding Consumer Participation in the Health Issues Centre Libraray: http://www.healthissuescentre.org.au/publications/library.shtml and the list of tools and resources.

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1. Health Issues Centre. A guide to enhancing consumer and carer participation in Victoria’s Integrated Cancer Services. Victorian Government Department of Human Services, Melbourne, Victoria, 2007. http://www.health.vic.gov.au/cancer/docs/consumer/icsguide0207.pdf)
2. New Zealand Guidelines Group. Effective consumer voice and participation for New Zealand. A Systematic Review of the Evidence. 2004. http://www.nzgg.org.nz/library_resources/88_consumer_report
3. The Consumer Collaboration. The evidence supporting consumer participation in health. National Resource Centre for Consumer Participation in Health, Victoria, 2001. http://www.healthissuescentre.org.au/publications/library.shtml
4. Currie, K. Spink, J., Rajendran, M. (2000) Communicating with Consumers series volume 1. Well-written health information: a guide. Department of Human Services Victoria, 2000. http://www.health.vic.gov.au/consumer/pubs/written.htm
5. National Health and Medical Research Council (NHMRC). How to present the evidence for consumers: preparation of consumer publications. Handbook series on preparing clinical practice guidelines. Ausinfo. Canberra, 2000. http://www.nhmrc.gov.au/guidelines/publications/cp66
6. Community Advisory Committee of the Southern Health Board. Audit of Consumer Participation Activity in Southern Health 2008 http://www.southernhealth.org.au/icms_docs/527_Audit_of_consumer_participation_activity_in_Southern_Health_2008.pdf

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As a health care professional, health service provider, health program manager, or policy maker, there are many ways you can work with organisations representing specific groups of consumers, consumer representatives involved in groups, individual consumers, and the broader community to enhance consumer participation in health.

Ideas for getting started include:

• Use one or more of the many guides, tools and other resources available to help you assess, plan, undertake and evaluate consumer participation.
• Contact peak organisations to find out about the key issues affecting the consumers and organisations that they represent, and/or to request involvement of one or more consumer representatives.
• Contact relevant local consumer groups to gain input at a local level. Groups could include local cancer support groups, consumer advisory groups to your health service, or other support and advocacy groups.
• Keep it simple - consider the practical approaches to consumer participation listed below

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A guide to enhancing consumer and carer participation in Victoria’s Integrated Cancer Services, prepared by the Health Issues Centre in 2007, lists (p24) the following practical approaches to consumer participation within a health service:

Information

• Improve quality and timeliness of dissemination of information to consumers about services and treatment options
• Use decision aids and question prompt lists where possible
• Publications, media releases and displays
• Internet

Consultation

• Public meetings/forums/open days
• In-depth consumer and carer interviews
• Focus groups

Collaboration

• Working with volunteers
• Workshops
• Patient forums
• Discussion papers
• Involve consumers/carers in staff training, development and selection
• Employ consumer/carer advocates/consultants
• Involve consumers/carers on committees
• Involve consumers/carers on project/working groups
• Involve consumers/carers on reference groups
• Partnerships of consumers/carers and providers for service planning and/or delivery
• Involve consumers and carers in research
• Involve consumers and carers in evaluation of services
• Facilitate support groups and involve members

NSW Consumer Advocacy Workshops

The Cancer Council, in partnership with Cancer Voices NSW, convenes two day advocacy training workshops four times per year. The workshop has been designed to assist people with cancer and their families/carers to become effective consumer advocates for improved health policies and systems. The aims of the workshop are:

• To provide participants with the skills and knowledge required to become active and effective advocates for improvements to cancer policies and systems
• To provide the skills and knowledge to effectively represent the interests of cancer consumers in a range of forums
• To empower cancer consumers to fully participate at all levels where cancer decisions are made
• To enhance participants' understanding of how to influence Government, the health delivery system, clinicians, research institutions, cancer organisations and support providers.

For more information please email kwilliams@nswcc.org.au

SA Consumer Advocacy Training

Cancer Voices SA, in partnership with the Cancer Council SA, will conduct training for consumers to become advocate. The comprehensive 2-day programs will run in March and November each year (dates to be confirmed). For more information please email info@cancervoicessa.org.au

QLD Consumer Advocacy Training

Cancer Voices Queensland, in conjunction with The Cancer Council Queensland, offers consumer advocacy training for members of Cancer Voices Queensland. For more information please email cancervoicesqld@cancerqld.org.au

For more practical approaches, guides and tools for consumer participation, see the list of tools and resources.

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Many health consumer organisations run consumer representative programs. These programs help health services, projects, committees and groups obtain consumer input by linking with one or more appropriate consumer representatives.

Consumer representative programs generally provide their representatives with training and support to help ensure they:

• understand the issues facing the group of consumers that they are representing
• are able to advocate on behalf of the group of consumers that they are representing
• have communication and other skills required to actively participate in a health or medical service/ committee/ group/ project etc
• have sufficient technical knowledge required for active participation in the service/ committee/ group/ project etc

Examples of consumer representative programs in Australia include:

Breast Cancer Network Australia’s Seat at the Table Program:
http://www.bcna.org.au/news/about-bcna/advocacy/position-statements/consumer-representation

Consumers’ Health Forum of Australia’s Consumer Representative Program:
https://www.chf.org.au/about-the-program.php

Health Issues Centre Consumer Nominee Program:
http://www.hic.infoxchange.net.au/participate/consumer.shtml

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There are many, many general health and cancer-specific consumer organisations in Australia. The national organisations (listed below) tend to represent a number of smaller member organisations.

General health consumer organisations:

Consumers’ Health Forum of Australia
https://www.chf.org.au/
The national voice for health consumers. As an independent member-based non-government organisation, CHF helps shape Australia’s health system by representing and involving consumers in health policy and program development.

Health Issues Centre
http://www.healthissuescentre.org.au/
An independent, not-for-profit organisation that has been promoting consumer perspectives in the Australian health system since 1985.

Cancer-specific, national consumer organisations:

Cancer Voices Australia
http://www.cancervoicesaustralia.org.au/
A national consumer advocacy organisation representing Australians affected by cancer. It aims to ensure the voices of people, their carers and families affected by cancer are heard at a national level. There are also Cancer Voices organisations in most states and territories:

Cancer Voices New South Wales
Cancer Voices Victoria
Cancer Voices South Australia
Cancer Voices Queensland
Cancer Voices ACT (email only)
Cancer Voices WA

Breast Cancer Network Australia
http://www.bcna.org.au/
Breast Cancer Network Australia is the peak national organisation for Australians personally affected by breast cancer. It works to ensure that Australians diagnosed with breast cancer and their families receive the best information, treatment, care and support possible. Many state-based and locally-based breast cancer consumer organisations and groups are members of the Breast Cancer Network Australia(BCNA). Their contact details and websites are listed on the BCNA website.

Other cancer-specific, community-based organisations that advocate on behalf of consumers:

Brain Tumour Alliance Australia (BTAA)
http://www.btaa.org.au/index.html
Brain Tumour Alliance Australia (BTAA) is the only national brain tumour patient and caregiver organisation in Australia.

CanTeen
http://www.canteen.org.au/
CanTeen - The Australian Organisation for Young People Living with Cancer is the national support organisation for young people (aged 12-24) living with cancer.

Leukemia Foundation
http://www.leukaemia.org.au/web/aboutus/whoweare.php
The Leukaemia Foundation is the national organisation dedicated to the care and cure of people living with leukaemias, lymphomas, myeloma and other related blood disorders, and support for their families.

Myeloma Foundation Australia
http://www.myeloma.org.au/
The Myeloma Foundation of Australia provides information and support to people affected by myeloma.

National Ovarian Cancer Network (OvCa)
http://www.ovca.org/
The National Ovarian Cancer Network (OvCa Australia) provides awareness campaigns and information services to educate women and medical practitioners about the risk factors for, and early warning signs of, ovarian cancer.

Prostate Cancer Foundation Australia
http://www.prostate.org.au/articleLive/
The Prostate Cancer Foundation of Australia (PCFA) is the national body for prostate cancer in Australia. It funds research and other efforts to reduce the impact of prostate cancer on the community.

Prostate Survival Alliance
http://www.prostatehelp.com.au
The Prostate Survival Alliance is a group of people from the Hunter and Hastings region of NSW who have had personal experience with prostate cancer. The Alliance aims to encourage men to be screened for prostate cancer.

Contact us if your national, cancer-specific, community or consumer organisation is missing from this list.

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For health professionals, health services, program managers, researchers and policy makers

Health Issues Centre. A guide to enhancing consumer and carer participation in Victoria’s Integrated Cancer Services. Victorian Government Department of Human Services, Melbourne, Victoria, 2007.
Designed to help Integrated Cancer Services strategically plan for consumer and carer participation as part of their overall quality improvement approach. It includes practical consumer and carer participation methods, case studies and references to support planning.
http://www.health.vic.gov.au/cancer/docs/consumer/icsguide0207.pdf

Consumer and community participation program team. Consumer and community participation toolkit. Queensland Health, 2002.
Developed for Queensland Health staff, containing information, case examples, methods, tools and resources which are relevant and meaningful to their organisational context. Includes a guide for developing and implementing a consumer and community participation plan; a list of tools for consumer and community participation and how to use them; key skills required for consumer and community participation; and a list of further resources.
http://www.healthissuescentre.org.au/publications/library.shtml

National Health and Medical Research Council. A model framework for consumer and community participation in health and medical research. National Health and Medical Research Council, Canberra, 2004.
Developed for research teams and other organisations seeking to enhance consumer and community participation in research.
http://www.nhmrc.gov.au/_files_nhmrc/publications/attachments/r33.pdf

National Resource Centre for Consumer Participation in Health. Methods and Models of Consumer Participation, 2004.
An introduction to methods, models and levels of consumer participation.
http://www.healthissuescentre.org.au/publications/library.shtml

National Resource Centre for Consumer Participation in Health. Consumer and Community Participation Self-Assessment Tool for Hospitals. 2003
Designed to help hospitals and hospital units to assess how much scope their system allows for consumer (patient), carer and community participation. The tool helps to document policies, processes and activities; identify strengths and weaknesses; and determine the steps and resources needed for improvements. http://www.healthissuescentre.org.au/publications/library.shtml

Primary Health Branch, Department of Human Services and Health Issues Centre. Welcome to the Primary Health Consumer, Carer and Community Participation Resource. 2007.
Developed to assist primary health agencies to increase the participation of consumers, carers and the community in their health service.
http://www.healthissuescentre.org.au/documents/items/2008/05/207407-upload-00001.pdf

Department of Public Health, Flinders University, and the South Australian Community Health Research Unit. Improving Health Services Through Consumer Participation: A Resource Guide for Organisations, Consumer Focus Collaboration, 2000.
Provides comprehensive information about methods, models and strategy selection for consumer participation, including an overview of barriers and constraints to participation, a section on factors that enable participation, and checklists.
http://www.healthissuescentre.org.au/publications/library.shtml

National Resource Centre for Consumer Participation in Health. Organisational Self-Assessment and Planning Tool for Consumer and Community Participation. A tool for organisations involved in health policy and education. 2003.
Designed to assist organisations to determine their commitment and capacity regarding consumer and community participation, and to identify areas of practice that could benefit from consumer participation.
http://www.healthissuescentre.org.au/publications/library.shtml

Cancer Voices NSW. Research Issues for Cancer Consumers. A position statement. 2006.
Cancer Voices NSW’s position statement regarding consumer participation in cancer research.
http://www.cancervoices.org.au/index.php?title=Cancer_Voices_NSW

Centre for Cultural Ethnicity and Health. A Practical Guide to CALD Consumer Participation. Centre for Cultural Ethnicity and Health, Victoria, 2005.
A two-page summary of different strategies that can be used to engage culturally and linguistically diverse (CALD) consumers in the planning, implementation and evaluation of health programs, projects and health services.
http://www.ceh.org.au/downloads/CALD_Consumer_Participation.pdf

Centre for Cultural Ethnicity and Health. Centre for Cultural Ethnicity and Health Consumer Participation Strategies Matrix. A Practical Guide to Engaging Culturally And Linguistically Diverse Consumers. Centre for Cultural Ethnicity and Health, Victoria, 2004
A one-page tool explaining different strategies for CALD consumer participation within a theoretical framework for participation.
http://www.ceh.org.au/downloads/Consumer_matrix.pdf

Centre for Cultural Ethnicity and Health. Consumer Participation and Culturally and Linguistically Diverse Communities. Centre for Cultural Ethnicity and Health, Victoria, 2005.
This report aims assist organisations to reflect on their current practice and build their capacity to implement culturally and linguistically inclusive consumer participation strategies. It identifies some of the critical success factors and challenges in working with CALD communities and presents a model for good practice as well as case-study examples of work undertaken in the health and community sector.
http://www.ceh.org.au/downloads/Consumer_Participation_and_CALD_Communities.pdf

Flinders Medical Centre. Consumer Participation Plan 2002-2003
An example of a consumer participation plan developed by a medical service
http://www.healthissuescentre.org.au/publications/library.shtml

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For consumers

Cancer Australia, Consumer Support and Information Resources
Cancer Australia aims to enhance support, information and participation in decision-making for all people affected by cancer and has provided a range of resources to engage and inform consumers to better enable their involvement. The Consumer Participation Guide and the Consumer Training and Mentoring Guide are two of the publications that have been developed to support consumers to contribute meaningfully to national cancer policy and programs, whilst recognising and building upon the skills and experiences of consumers. The launch of the consumer publications recognises the importance of continually improving the services and support available to people living with cancer and their families and carers.
http://www.canceraustralia.gov.au/affected-cancer

Not Just a Token Rep project, North West Suburbs Health & Social Welfare Council. The little purple book of community rep-ing, Adelaide Central Community Health Service, 2003.
Highlights the pitfalls and satisfactions of entering into community participation. It is meant to be taken seriously and yet it contains lots of cartoons and is also mean't to be laughed over.
http://www.healthissuescentre.org.au/publications/library.shtml

Consumers’ Health Forum of Australia. Guidelines for consumer representatives: suggestions for consumer or community representatives working on committees. 2001.
A practical tool for consumer representatives who are nominated onto committees (councils, working parties, boards, reference groups, etc.) by a consumer organisation.
https://www.chf.org.au/resources-guidelines.php

Saunders, Carla; Girgis, Afaf; Butow, Phyllis; Crossing AM, Sally; and Penman, Andrew (2008), From inclusion to independence - Training consumers to review research. Health Research Policy and Systems, 6:3.
Lay community members can be trained to independently review health and medical research, and wider societal involvement in funding decisions, can be effectively fostered. The theoretical foundation, design and development of a task based consumer-training program, including a number of enabling factors to support the success of such training are presented.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2292183/

Saunders et al. (2007), Operationalising a model framework for consumer and community participation in health and medical research. Australia and New Zealand Health Policy, 4:13
Describes how a large charity organisation, which funds a significant proportion of Australian cancer research, operationalised the Consumers' Health Forum of Australia and the National Health and Medical Research Council's Model Framework for Consumer and Community Participation in Health and Medical Research.
http://www.anzhealthpolicy.com/content/4/1/13

Crossing, Sally AM (2007), Consumer involvement in research: priorities and process. 5th Australasian Conference on Safety and Quality in Health Care, 6-8 August 2007.
PowerPoint presentation of how the Model Framework for Consumer and Community Participation in Health and Medical Research can be implemented to involve consumers in research and funding decisions.
http://www.achs.org.au/pdf/tue.plen4.crossing.pdf

Saunders et al. (2007), Beyond scientific rigour: funding cancer research of public value. Health Policy, 84(2-3):234-42.
The findings of this study clarify consumer and community values regarding cancer research funding and offer a means to evaluate research that address these values.
http://www.ncbi.nlm.nih.gov/pubmed/17573144

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The links below will provide a useful starting point if you are interested in examining the evidence-base for consumer participation in health.

New Zealand Guidelines Group. Effective consumer voice and participation for New Zealand. A Systematic Review of the Evidence. 2004.
http://www.nzgg.org.nz/library_resources/88_consumer_report

The Consumer Collaboration. The evidence supporting consumer participation in health. National Resource Centre for Consumer Participation in Health, Victoria, 2001.
http://www.healthissuescentre.org.au/publications/library.shtml

Coulter A, Ellins J. Patient-focussed interventions: a review of the evidence. Picker Institute Europe. 2006. http://www.pickereurope.org/page.php?id=23

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Cochrane Consumers and Communication Review Group. A Framework for Evaluating Consumer Participation. Australian institute for Primary Care, La Trobe University, 2007.
http://www.latrobe.edu.au/chcp/assets/downloads/participationevaluationframeworkFeb07.pdf

Entwistle, V. Towards Constructive Innovation And Rigorous Evaluation: A New Series On Methods For Promoting And Evaluating Participation, Health Expectations, 2, pp 75-77, 1999.

White, D. Consumer and Community Participation: A Reassessment of Process, Impact and Value in The handbook of Social Studies in Health and Medicine, 2000.

Wohlers, Margaret (2002), Developing Evaluation Indicators for Consumer and Community Participation in Health Issues, 72, pp 24-28.

Department of Public Health, Flinders University, and the South Australian Community Health Research Unit. Improving Health Services Through Consumer Participation: A Resource Guide for Organisations, Consumer Focus Collaboration, 2000.
Section 5 includes an evaluation checklist and list of evaluation data collection tools:
http://www.healthissuescentre.org.au/publications/library.shtml

National Resource Centre for Consumer Participation in Health includes an overview about consumer participation evaluation and lists the following evaluation resources tools:
http://www.healthissuescentre.org.au/publications/library.shtml

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