Rare Voices Australia’s Submission on the Future Governance and Administration of Australian Health and Medical Research Funding

RVA News

Combined, the National Health and Medical Research Council’s Medical Research Endowment Fund (MREA) and the Medical Research Future Fund (MRFF) award approximately $1.5 billion in health and medical research grants every year. The National Health and Medical Research Council (NHMRC) typically funds investigator-led (that is, led by a researcher or researchers) grants focused on fundamental discovery research looking at the underlying biology of disease, clinical care as well as public health and health systems research. In 2015, the Australian Government launched the MRFF to fill a noticeable gap in priority-driven translational research. Due to the high levels of unmet need and limited knowledge in rare diseases, the MRFF’s approach to funding has been transformative for rare disease research.

The Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan) and Rare Voices Australia’s (RVA) strong relationships with policymakers and health departments have enabled greater investment in rare disease research, particularly through the MRFF. As the national peak body for Australians living with a rare disease, RVA’s advocacy was critical in highlighting the need for a greater rare disease research focus in Australia, which led to the MRFF’s investment in the Rare Cancers, Rare Diseases and Unmet Need competitive grant program. The Action Plan —developed by the rare disease sector, for the rare disease sector—further highlights the need for more coordinated investment into rare disease research.

Improving Alignment and Coordination between the National Health and Medical Research Council’s Medical Research Endowment Account and the Medical Research Future Fund

On 19 June 2023, together with clinicians, researchers and leaders from a range of research institutions and universities across Queensland and New South Wales, RVA was invited to a roundtable discussion to contribute rare disease expertise to discussions around the future governance and administration of the MREA and the MRFF. RVA used this opportunity to highlight the critical importance of embedding research into clinical care for people living with a rare disease, and the need for research that builds evidence for policy-driven equitable access to innovative healthcare. RVA also called attention to the need to include all stakeholders (including consumers and peak bodies, policymakers, federal, state and territory hospitals and health administrators, early, mid and late career researchers, clinicians, and clinician-researchers) in any new governance advisory structure for the delivery of health and medical research funds in Australia.

Rare Voices Australia Submission

RVA provided a written submission to this consultation addressing the current strengths and weaknesses of the MREA and the MRFF for rare disease, and the newly proposed governance and administration models. RVA’s detailed position on this consultation, which informed our submission, is linked below, together with condensed responses to the Guiding Questions of the consultation. Please read the Health Minister’s Discussion Paper for more information about the models that were proposed to support discussions for this consultation.

Download RVA’s detailed position (PDF)

Download RVA’s submitted responses to the Guiding Questions (PDF)