The Telethon Institute for Child Health Research (Telethon Institute) in association with The School of Population Health (the School) at The University of Western Australia have adopted a long term plan to actively involve consumers and community members in research.

This consumer and community participation program is aligned with the National Health and Medical Research Council (NHMRC) and Consumers Health Forum of Australia Inc (CHF) joint documents:

A Model Framework for Consumer and Community Participation in Research


Resource Pack for Consumer and Community Participation in Health and Medical Research


The Telethon Institute has a Consumer and Community Advisory Council which aims to develop partnerships in which consumers, community members and researchers will work together to make decisions about research priorities, goals, methodologies, questions and dissemination of results. Read more on the Consumer and community participation program.

The School of Population Health and the Telethon Institute have also developed a website to support consumers, community members and researchers. The website includes Fact Sheets, resources and information on training sessions.

Visit the Involving People in Research website

Who do I contact?

Anne McKenzie or Hayley Haines

Email: ipir@ichr.uwa.edu.au

Consumer and Community Participation in Alcohol and Pregnancy Projects

Consumer and community participation in research, and in particular alcohol and pregnancy projects, has increased over the past eight years. In recent alcohol and pregnancy projects consumer and community representation on Advisory Groups/Steering Groups and involvement in the research has been part of the research design. Consumer and community collaboration has been evaluated following several projects with comments such as: "as consumers we were part of a very constructive process of turning research into useful resources".

To inform the project to "develop a screening-diagnostic instrument for FASD in Australia", it was considered it essential to have an active partnership between women in the community, health professionals and researchers by providing a process for consumer and community input. In the developmental stages of the project the Telethon Institute Consumer Advocate was invited to join the Australian FASD Collaboration to provide advice on the process for consumer and community participation. In addition to the consumer and community representatives on the Australian FASD Collaboration, there was wider consumer and community input through the Alcohol and Pregnancy Community Conversations. Community Conversations are small discussion groups using a 'world café' process to explore questions about a specific issue.

The Community Conversations held in Perth and Cairns were the foundation for meaningful and inclusive consumer and community participation in this project.  One of the members of the Australian FASD Collaboration stated "the community conversations were integral to the success" and others commented that"consumers and community members offer a different perspective to those of health professionals and researchers" and "… are a constant reminder of the world outside research".  Read the Community Conversation Report.