About the Consumer and Community Health Research Network

Our journey

The Consumer and Community Health Research Network was established in July 2016 with funding from Lotterywest. This exciting initiative, which is a first for Australia, expands the Involvement Program at The University of Western Australia’s School of Population and Global Health and Telethon Kids Institute .

The Involvement Program was initially established at the School of Population Health in 1998 and then joined by the Institute in 2002. Health consumers at this time were concerned about the lack of community transparency and accountability for data linkage research projects.

We work closely with community organisations such as the Health Consumers' Council  WA and Consumers’ Health Forum of Australia. We also have well-established links with the Western Australian Department of Health hospitals, other health services and Western Australian universities. Many of our consumers and community representatives have wide and extensive local and national networks.

We also collaborate closely with UK based organisations INVOLVE and TwoCan Associates.

The Consumer and Community Health Research Network is guided by the National Health and Medical Research Council and the Consumers’ Health Forum of Australia joint statement and framework:

The gradual increase in researchers, consumers and community members working together has resulted in the Consumer and Community Health Research Network being recognised as a national leader in consumer and community involvement.

Since 1998 we have developed a range of strategies, systems and methods to successfully involve consumers and community members in research projects. Research areas include laboratory, epidemiology, clinical and data linkage. Research ranges from student and individual projects to large multi-million dollar programs.

The Consumer and Community Research Network provides:

  • Senior level support and champions
  • Dedicated positions to support and develop:
    • Governance and policy frameworks
    • A range of methods with budgeted involvement activities
    • Training for researchers, consumers and community members
    • Community links, networks and forums
    • Resources, publications and a website to support involvement

In mid-2015 the Consumer and Community Involvement Program changed its name from the Consumer and Community Participation Program. This change reflected discussions held by consumer groups across Australia that involvement was more descriptive of the activity. This change also aimed to minimise the confusion between active involvement and participating in a study. The National Health and Medical Research Council also moved to the term 'involvement' in their revised version of the Statement on consumer and community involvement which is currently out for public comment.