Published: Consultation Report for the Review of the 2016 Statement on Consumer and Community Involvement in Health and Medical Research (2025)
In 2024 and 2025, Rare Voices Australia (RVA) contributed to the review of the 2016 Statement on Consumer and Community Involvement in Health and Medical Research (the 2016 Consumer Statement). The review was led by the National Health and Medical Research Council (NHMRC) in partnership with the Consumers Health Forum of Australia (CHF). Additional information about the review process is available on the NHMRC’s website.
In June 2025, following extensive consultation with the sector, the NHMRC and CHF released a draft revised Consumer Statement (the draft Statement). During the second half of 2025, stakeholders, including RVA, were invited to provide feedback through multiple channels. These channels included written submissions via a public consultation survey, as well as participation in online and in-person workshops.
RVA acknowledges the NHMRC and CHF on their extensive consultation and welcomes the culmination of sector feedback in the Consultation Report for the Review of the 2016 Statement on Consumer and Community Involvement in Health and Medical Research (2025) (Consultation Report).
RVA is pleased to see key themes from the feedback we provided as the national peak body for Australians living with a rare disease reflected in the Consultation Report, including:
- the need to ensure representative consumer involvement to reflect diverse perspectives;
- the need for greater accountability for consumer and community involvement in research, including the need for formal reporting on consumer and community involvement (CCI) by funders, researchers and institutions;
- the need to provide training and capability-building for both researchers and consumers to ensure effective involvement; and
- the importance of active, early and continuous consumer engagement from across the research life cycle.
About Rare Voices Australia’s Involvement
More information about RVA’s contributions throughout the consultation process is available in the following articles on RVA’s website:
