Consumer and Community Involvement
We are committed to strengthening consumer and community involvement in health research across Australia.
The importance of involving consumers and community in research cannot be overstated, with compelling global experience that involving consumer and community members in all phases of health and medical research adds meaningful value, and enhances the translation of research findings and discoveries into better clinical care.
AHRA’s Consumer and Community Involvement (CCI) Initiative is a program of work which aims to embed the involvement of consumers and the community in health and medical research policy and practice.
Phase 1 of the Initiative was conducted in 2018 (see below), Phase 2 of the CCI Initiative (underway) focuses on four priority areas:
- Developing a handbook with practical steps to guide stakeholders and organisations in embedding CCI in health and medical research (Lead: Western Australian Health Translation Network)
- Establishing a knowledge hub that brings ideas, knowledge, tools, research and activities together in a central online space (Lead: Monash Partners, SPHERE)
- Identifying and testing approaches that show if involving consumers in health research makes a difference, and the kinds of effects it has in different research settings (Lead: Sydney Health Partners, Health Translation SA, NSW Regional Health Partners)
- Establishing an International CCI Alliance with international agencies that promote consumer and community involvement in health research such as INVOLVE in the United Kingdom, Patient Centred Outcomes Research Institute in the United States, and Strategy for Patient-Oriented Research, an initiative of the Canadian Institutes of Health Research. (Leads: Western Australian Health Translation Network, Melbourne Academic Centre for Health)
We believe that consumers and community members have an inherent right to be informed and included in decisions affecting health and medical research.
The CCI Initiative was one of the first four national system-level initiatives identified as priorities by AHRA. Phase 1 of the Initiative, conducted in 2018, was supported by a steering group comprising representatives from AHRA’s member organisations at the time.
CCI Phase 1 involved a national survey across AHRA members to understand CCI attitudes, practices and resources and an environmental scan of the CCI landscape in four other jurisdictions. This work was detailed in a comprehensive report which described a shared vision and four key recommendations for embedding CCI in research policy and practice across Australia. These recommendations are the basis of the CCI Phase 2 Initiative currently underway.
The Value of Consumer and Community Involvement
This paper describes the case for consumer and community involvement in health and medical research, presenting the current evidence on the value of involvement.
In September 2020, AHRA and CHF published a joint position statement affirming their commitment to CCI in health and medical research.