Victorian Consumers Participate in Health

Practice Examples and Evidence

The Aboriginal and Torres Strait Islander Hospital Accreditation Project aims to obtain accurate data about the use of hospitals by Koori patients and to help develop more accessible and culturally appropriate hospital services. This report looks at the problems and successes of the project and makes suggestions for improvement.

A Matter of Forethought
This article describes how a Disability Advocacy and Information Service supported consumers to in their efforts to bring about practical changes in their on communities.

An Evaluation of Three Democratic, Community-Based Approaches to Citizen Participation: Surveys, Conversations With Community Groups, and Community Dinners
This study evaluates how well three participatory techniques - a mail survey, focused conversations with existing community groups, and community dinners - meet three key community oriented criteria. These are: representative-ness, working toward identification of communitywide common good, and incorporation of values and beliefs into the discussion. The evaluation conducted in this study indicates that the techniques produce positive results for two of these criteria, but may not be representative of the communities as a whole.

The Austin Bowel Cancer Consortium involved doctors and consumers from three Victorian hospitals, along with the North East Valley Division of General Practice, Health Issues Centre, and social science researchers from Swinburne University. The project aimed to better understand the cancer care system so that it could be improved. Patients and carers took part in interviews about their experiences of services, and participated in consumer reference and implementation groups. Consumers also contributed to a psychosocial working group which focused on communication between clinicians and patients.

Bendigo Regional BreastScreen Consumer Advisory Group: Working Together to Represent Women
This article describes how Bendigo Regional BreastScreen supports and works with consumers to improve their services for women.

Be With Us
We know the appalling statistics for Indigenous health in Australia. But what about Indigenous carers? This 2005 report from Roseanne Hepburn for Carers Victoria found that although very few Indigenous people identify as carers, many have significant care responsibilities. Their stories show the legacies of colonisation, dispossession and racism, and a strong need for culturally appropriate support and respite.

Breastscreen Victoria's Annual Report 2004-2005, Pleased to Meet You is an innovative example of how the concept of consumer participation can be woven through an entire document, using photographs, short profiles and quotes from different members of the Consumer Advisory Committee.

Bundoora Extended Care Centre: Interested in how your organisation might involve consumers, or how you as a consumer might get involved, but not sure how to begin? Bundoora Extended Care Centre's progress report on its consumer/community participation program is an example of the types and range of activities that can be undertaken. The report is organised using a helpful matrix that divides participation into different kinds of strategies and links each strategy to a specific level in the organisation.

The Cochrane Consumer Network
This Network is an example of how consumers can participate in assessing the evidence of what really works in health interventions. Consumers throughout the world communicate via a moderated email list. The site gives examples of how consumers are contributing in a range of ways to the reviews undertaken by Cochrane Collaboration teams.

Community Engagement as Easy as ABCD
This paper describes the experiences of the South Metropolitan Public Health Unit and the City of Fremantle working with Indigenous communities to plan future actions. They used an assets-based community development (ABCD) approach called Appreciative Inquiry, to engage an Indigenous community and local services to evaluate a cultural community development program.

Consumer Engagement in Australian Health Policy
The Australian Institute of Health Policy Studies is undertaking this project with the aim of developing more effective models in the future. The first stage of the project is a literature review which explores current approaches and compares them to the methods used in other sectors and overseas. It includes examples of consumer involvement in the policy-making process.

Consumers Have their Say in the Management of Hypertension
This article describes the Take the Pressure Down Project that aimed to improve health outcomes and quality of life for consumers with, or at risk of, hypertension in the Banyule and Nillumbik Shires. As part of the commitment to engaging consumers in the planning, development and delivery of this project, a Consumer Reference Group was established. The article covers the establishment of the Consumer Reference Group, the support provided and key lessons learnt from this model of consumer participation.

Consumer Views on Participating in the Austin Bowel Cancer Consortium Clinical Support Systems Program
The Austin Bowel Cancer Consortium was one of the four sites chosen to test the Clinical Support Systems Program model and explore how to support clinicians and specialists to optimise the use of evidence in their practice and how consumers can be involved in the process. This article describes how consumers participated in the project, how they perceived the experience of participation, and to what extent they considered their participation empowering and effective in delivering more responsive health services

Community Participation: A Bottom Up Approach
This article describes how the Mallee Division of General Practice developed a consumer participation strategy, which started with just nine focus groups and led to a network of ongoing groups working, and succeeding at improving health and health services over several years.

Community Participation in Action: In September 2003, Southern Health held a forum where four methods of consumer participation (written survey, discussion group, nominal technique and citizens' jury) were used to explore community opinions on funding, providing resources, and setting priorities for public health. The forum aimed to compare decisions and ideas produced by each method to determine was best able to produce "meaningful community input".

Consumer Participation and Culturally and Linguistically Diverse Communities is a report by the Centre for Culture Ethnicity and Health that critically examines a range of consumer participation strategies. The report includes a model of good practice, a practical guide to CALD consumer participation, and a checklist for making focus groups culturally appropriate. The themes are also illustrated by a collection of case studies showing how health and community organisations have worked with CALD communities and consumers.

The Consumer Participation in Staff Selection Strategy at the Northern Area Mental Health Services was initiated by consumers and involved the recruitment, training and participation of consumers in staff selection processes. The evaluation two years later found that it had 'profoundly influenced the culture of the service' (p. 6), not just in employment processes, but in terms of relationships between staff and consumers.

Empowerment: Women’s Sexual Health Through Education – A Peer Leadership Model is a partnership between women with intellectual disabilities and health practitioners. The project used an action research approach to explore what women had found to be barriers to sexual health, and what they had found helpful. The women worked with a community artist, leading to a pilot group work program designed to deliver sexual health education. The pilot program was later extended so that the women participants were trained as peer leaders for the next group of young women choosing to access the group.

Engaging Consumers in Health Policy: Assessing Models and Outcomes
The Australian Institute of Health Policy Studies 3rd National Health Policy Roundtable focused on Engaging Consumers in Health Policy: Assessing Models and Outcomes (November 2005). The material includes a Discussion Paper arguing the need to think more clearly about consumer participation and more rigorously assess the evidence for its benefits.

Health Literacy Project in a Community Health Service
This article describes the methods a Victorian community health service used to engage their community while developing health information for the community's use.

Impact of the Ottawa Decision Support Framework on the Agreement and the Difference between Patients' and Physicians' Decisional Conflict
This article describes a before-and-after study with 120 physicians and 903 patients to asses the use of the Ottawa Decision Support Framework (ODSF) that provides a process that facilitates shared decision making.

'I Plan, You Participate': A Southern View of Community Participation in Urban Australia
The article described the recent history of M5 East Motorway Tunnel Exhaust Stack located in a residential area of Sydney. The paper shows how the process of participation is determined by the government's preference for a more 'scientific' view irrespective of citizen opinions.

Listening to Ethnic Communities about Diabetes
www.ceh.org.au/resources/resbyceh.html
The ethnic community stakeholders as partners in primary and secondary diabetes prevention project (2003) was developed, piloted and evaluated culturally appropriate health promotion strategies with Maltese, Filipino and Vietnamese communities in Brimbank, Victoria. The project bridged the gap between health and ethnic community sectors and won an Innovation and Excellence in Primary Health Care Award.

Participation, Empowerment and Effectiveness: The Tall Girls Experience
Tall Girls Inc. is a small self-help consumer health group representing women who, as tall girls, were treated with synthetic oestrogen to stunt their growth. This article describes how the group formed and how the women have been able to publicise the issues in Australia and overseas. Tall Girls has also been involved in a research study looking at the long-term health outcomes of the treatment.

Patient-Focused Interventions: A Review of the Evidence looks at the costs and benefits, in terms of health care quality, of various United Kingdom strategies to involve patients and the public. These include patient involvement in safety, improving the care experience and health decision-making, and managing one's own health care more effectively.

Patient Opinion
An interesting United Kingdom example of how consumers are influencing the National Health Service is Patient Opinion, which allows people to give anonymous online comments about their experiences of hospital services. Other consumers can then read these. The site began in 2005 and is funded by hospitals who subscribe to access the information and analyses of the data.

Performance Reporting for Consumers: Issues for the Australian Private Hospital Sector
This article describes how a group of consumers created a consumer-driven performance report for a private health service.

Political Visions: Blindness Prevention Policy as a Case Study of Community-Government Relations in Aboriginal Health looks at what consumer participation really means in relation to Aboriginal eye health policy and practice. Based on interviews with key stakeholders in the Aboriginal community-controlled health sector and non-Aboriginal bureaucrats and politicians, this Onemda VicHealth Koori Health Unit study includes an examination of the Victorian Aboriginal Eye Health Program.

Primary Care Reform: Consumers Get the Job Done
The South West Primary Care Partnership's Consumer Access to Service Information Project resulted in three consumer-designed Service Information Hubs opened their doors, two in Warrnambool and one in Port Fairy. The project has seen consumers leading the project through every phase. This article reviews the methods and models of consumer participation used within the project, the use of community development strategies as a facilitator between community and bureaucracy within the health reform context, and the challenges the project faces.

Reality Check: Culturally Diverse Mental Health Consumers Speak Out (2004) is a project from Multicultural Mental Health Australia, National Ethic Disability Alliance, and the Australian Mental Health Consumer Network.
The report presents findings from a series of national consultations with Cultural and Linguistically Diverse mental health consumers about their needs, concerns and aspirations, and includes a CALD consumer service provider checklist.

Southern Health: Working with the Community
Southern Health established a Community Advisory Committee to provide advice to the Board and to ensure consumers, carers and the broader community play a participatory role in planning, service delivery and policy development. This article outlines the Committee's progress in integrating consumer and community participation as core business of the health service, with a particular emphasis on the development of a Community Participation Plan.

Talking About Teeth: The Experience of Dental Health Consumers
This article describes a consultation with dental health service users by the Royal Dental Hospital Melbourne. The 2000 project asked consumers for their thoughts on the design of the then new hospital, their experiences of the services, and how best to consult consumers in the future.

Using Consumer Groups in an Audit of Complaints
This article describes a pilot of an audit of one form of feedback-complaints- in the Victorian breast cancer screening program. The core activity of the audit was the use of consumer groups to review individual consumers' complaints.

Victorian Consumers Participate in Health Conference
On 12 October 2005, Health Issues Centre hosted the Victorian Consumers Participate in Health Conference in Melbourne. Eleven Community Advisory Committees from across the Melbourne metropolitan area gave presentations demonstrating the diverse ways in which Community Advisory Committees have responded to addressing consumer participation in their health network. The presentations given at this conference can be found at the conference section of this page.

What Patients Really Want
IAPO's survey on perceptions of healthcare among patients' organisation members in Canada, Nigeria, and 10 European Union member states found strongly shared views. Recurring themes were the need for timely access to the best treatment and information, and belief in patients' rights to participate in decisions about their health care and in health care policy making.

Woman to Woman: A research report on the experience of rural women with breast cancer and implications for the provision of health services is an example of participatory research. It was designed to explore the effects of breast cancer and breast cancer treatment on rural women. 20 women in the Hume region of Victoria who had been diagnosed and treated for breast cancer were asked to reflect on the effect of breast cancer on their lives, and on the nature and quality of the services they received. They spoke about what was helpful to them and gave their views on how services could be improved.