In May 2024, the Hon Mark Butler MP, Minister for Health and Aged Care, announced the Australian Government’s commitment to developing a National Health and Medical Research Strategy (the Strategy). Read the media release. The aim of the Strategy is to help target funding and strengthen Australia’s world-leading health and medical research capabilities into the future to further improve the health and lives of Australians.
Recently, the Department of Health and Aged Care launched an Australian Health and Medical Research Workforce Survey (the Survey), which is part of extensive consultations that will contribute supporting evidence to the development of the Strategy and future policies. The aim of the Survey is to understand the demographic features, work environment, challenges, and motivations of health and medical researchers across Australia, including those in research support roles.
One of the three foundation principles in the Australian Government’s National Strategic Action Plan for Rare Diseases (the Action Plan) highlights the need for sustainable systems and workforce, which will also assist with implementation across all three key Action Plan Pillars (Awareness and Education; Care and Support; and Research and Data). More specifically, the following Priorities in the Action Plan emphasise the importance of embedding research into clinical care for people living with a rare disease.
Priority 1.3: ‘Develop a national rare disease workforce strategy that responds to current and future demands, including the impact of genomics’
Priority 3.4: ‘Translate research and innovation into clinical care; clinical care informs research and innovation’
Why is this important for Australians living with a rare disease?
The importance of the health and medical research workforce for people living with a rare disease and their families cannot be overstated. This workforce is vital to advancing understanding of the mechanisms of rare diseases, identifying and implementing new and novel health technologies, and developing best practice care and support.
Driven by the inherent lack of knowledge, treatments, and evidence-based care and support in rare disease, the overwhelming majority of rare disease stakeholders, including people living with a rare disease and rare disease representatives, have experience advocating for, and participating in, research.
Rare Voices Australia encourages individual rare disease stakeholders who have had either direct or supportive roles in research, including those in the not-for-profit space, to take part in this Survey. The Survey is open until 9 August 2024 and should take no longer than 10 to 15 minutes to complete.
