Update: Review of the National Health and Medical Research Council Statement on Consumer and Community Involvement in Health and Medical Research


The National Health and Medical Research Council (NHMRC) is currently reviewing the Statement on Consumer and Community Involvement in Health and Medical Research 2016 (Consumer Statement). The aim of the Consumer Statement is to guide research institutions, researchers, consumers and community members regarding the active involvement of consumers and community members in all aspects of health and medical research. The Consumer Statement outlines the benefits and levels of consumer and community involvement in research. Consumers and community representatives, researchers and research administrators, peak bodies, advocates, funders and government have been invited to contribute at all stages of the review.

On 24 April 2024, as the national peak body for Australians living with a rare disease, Rare Voices Australia (RVA) attended one of a series of workshops, led by the Australian Health Research Alliance (AHRA), to address specific discussion questions around content for the revised Consumer Statement.

All stakeholders—both individuals and organisations—were invited to contribute written feedback to address these discussion questions via an online survey. RVA contributed written feedback to this consultation informed by the Australian Government’s National Strategic Action Plan for Rare Diseases and learnings from RVA’s Research Partnerships program. This survey has now closed.

In brief, RVA’s written contribution to this consultation spoke to the ethical imperative of involving consumers and community in all types of research. We also made strong recommendations to include accountability, transparency, equity, diversity, respect, as well as recognition for the autonomy of roles in research partnerships as overarching values in the Consumer Statement. RVA’s submission mentioned the need to include the role of consumers and community in reporting to research funders and research institutions, and the importance of inviting consumers and community into the reporting process.

RVA’s full submission will be publicly available in time.

RVA looks forward to the outcome of this revision and anticipates more practical guidance that makes all stakeholders accountable for effective consumer and community involvement in health and medical research.