Rare Voices Australia Submission: Draft Statement on Consumer and Community Involvement in Health and Medical Research

Rare Voices Australia (RVA) recently provided input into the consultation on the draft Statement on Consumer and Community Involvement in Health and Medical Research (draft Statement).

The National Health and Medical Research Council (NHMRC) and the Consumers Health Forum of Australia (CHF) are reviewing the Statement. Learn more about the review via the NHMRC’s website.

About Rare Voices Australia’s Submission

RVA’s submission is informed by the Australian Government’s National Strategic Action Plan for Rare Diseases, which highlights the need to ensure research into rare diseases is collaborative and person-centred. As the national peak body for Australians living with a rare disease, RVA strongly supports a robust framework to embed meaningful consumer involvement across all areas of health and medical research.

RVA’s submission welcomed the inclusion of values such as accountability, transparency, equity, respect and diversity in the draft Statement. Based on experience partnering with researchers, RVA views accountability as an overarching value underpinning effective consumer involvement.

Recommendations from Rare Voices Australia’s Submission

RVA’s submission also outlined several recommendations to strengthen the draft Statement, including the need to:

• Explicitly highlight the importance of active, early and continuous consumer engagement from conceptualisation to outcomes, including planning for next steps when projects conclude
• Provide more tangible examples of how consumers can be actively and meaningfully involved at every stage of the research cycle
• Strengthen the values by highlighting the importance of ‘solution-focused’ and ‘strengths-based partnerships’
• Better emphasise the importance of long-term investment in building respectful, trusted partnerships with consumer representatives
• Provide training and capability-building for both researchers and consumers to ensure effective involvement
• Set clear expectations for consumer roles, acknowledge contributions, and embed reflective practice as part of accountability
• Prioritise representative consumer involvement to reflect diverse perspectives
• Require institutions and funders to monitor and hold researchers accountable for their commitment to involving consumers
• Implement accountability mechanisms, such as mandatory reporting on consumer involvement and opportunities for consumer feedback to researchers, funders and institutions
• Embed cultural change, by integrating the Statement into undergraduate curricula and early career researcher development to support long-term systemic change