Nothing about us without us

Consumers and researchers collaborating to improve health outcomes through research

Nothing about us without us

Consumers and researchers collaborating to improve health outcomes through research

Involving consumers and the community in health research is a human right, it improves health outcomes for consumers and the health system.

It also ensures that researchers undertake research that is meaningful for health consumers and the community.

Why involve consumers in research

Why?

Consumers and community members have an inherent right to be involved in health research.

Evidence shows that involving consumers in health research improves outcomes for people using the health system.

National guidelines from the National Health and Medical Research Council, the Medical Research Futures Fund and the National Clinical Trials Governance Framework identify the critical importance of involving consumers and the community in all stages of health and medical research.

What?

Consumer and community involvement in health research is doing research with or by people who use health services, rather than to or about them.

How?

A graphic image of the research cycle.

Consumers can be involved throughout the research cycle. This includes deciding what to research, how to do the research and letting people know the results.

How can we help you?

We can help you by:

  • Providing training for researchers and consumers in involving consumers in health research.
  • Provide fee-for-service consulting on how to involve consumers in your research organisation. For example, undertake a needs analysis of Consumer and Community Involvement in your organisation and develop a plan of action. (See example)
  • Work with consumers and researchers to design a Consumer and Community Involvement framework. In 2020, we worked with Sydney Health Partners to design a Consumer and Community Involvement Framework, principles and a language guide. (See example)
  • Work to create a consumer advisory structure for your research project that can assist your grant applications.
  • Connect you to trained consumers who can be involved in your research.
  • Partner with you (for a fee) to support the involvement of consumers in your research project.