On 29 August 2024, the Health and Medical Research Office (HMRO), held a public webinar to share updates to the Medical Research Future Fund monitoring, evaluation and learning strategy (the Strategy). The Strategy outlines the framework for assessing the performance of the Medical Research Future Fund (MRFF) to support its continued improvement. The framework is set around 8 measures of success under 5 impact measures.
Rare Voices Australia (RVA) thanks the HMRO for an informative and interactive webinar and welcomes the changes to the Strategy. Informed by broad stakeholder consultations, specific changes to one ‘impact measure’ and two ‘measures of success’ highlight the importance of beneficial change to, and embedding, health policy. RVA also welcomes the addition of consumer involvement indicators and measurable outputs, which aim ‘to capture the level of involvement of relevant consumers throughout the research pipeline, from priority setting, co-design through to dissemination and translation’, and the addition of performance indicators and associated measurable outputs for assessing how MRFF-funded projects are targeting priority populations.
Rare Voices Australia’s Input
As the national peak body for Australians living with a rare disease, RVA has been invited to discussions with the HMRO and provided feedback on the evaluation of specific MRFF grant initiatives, including the Genomics Health Futures Mission. During these discussions, RVA emphasised the importance of building evidence to inform policy change that improves the health and wellbeing of Australians living with a rare disease. We are pleased to see this picked up in the Strategy.
Updates to the Strategy align with the Australian Government’s National Strategic Action Plan for Rare Diseases, which highlights the need for a person-centred approach to rare disease research, under Research and Data (Pillar 3).
During the webinar, Research Administration Officers mentioned that one of the main data capture methods for tracking impact of research funding moving forward is a performance indicators survey (which is relaunched every six months). This survey was open to all stakeholders involved in research, including consumers. RVA encourages rare disease organisations involved in partnerships with researchers funded by the MRFF to subscribe to the MRFF newsletter to hear about future opportunities to contribute to monitoring and evaluation of MRFF-funded research.
