Research Australia - INSPIRE Issue 21: The consumer's role in Health & Medical Research

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THE POWER OF THE CONSUMER VOICE Embedding the consumer perspective in large collaborative cancer research initiatives


ustr alian cancer patients need timely and affordable access to the best cancer treatments available. Yet, deciding which new cancer treatments to subsidise on the PBS and MBS is a complex undertaking, with rapid growth in the number, type, combinations, and cost of cancer treatments creating a dynamic landscape. This variation increasingly leads to gaps in the supporting evidence about the new treatments, introducing uncertainty for decision makers and patients. PRIMCAT, a large consumer-informed multi-institutional MRFF funded research program (MRF1199701), is underway to address some uncertainties by forecasting changes in cancer patient populations eligible for treatment. This will better inform government decision making and improve patient access to needed treatments. Led by Professor Maarten IJzerman (University of Melbourne), and in collaboration with the University of NSW: Centre for Big Data Research in Health, The Walter and Eliza Hall Institute, The Melbourne Institute and The Sir Peter Mac Callum Department of Oncology, PRIMCAT has partnered with consumers from inception. A key

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member of the team, consumer leader and Associate Investigator Ms Sophy Athan drives the strategic intent to broaden and strengthen the role of consumers over the course of the research program.


Research impacts consumers and consumers should therefore play an active role in research. When we partner with consumers and understand their perspective, it can influence the research undertaken, making it more relevant for consumers and highlighting priority areas and research gaps. Consumer advice can reframe research and change the way it is approached or designed, bringing insights into the potential impacts of research and transforming the translation of results.


To achieve meaningful consumer engagement in PRIMCAT, it was important to adopt a partnership model. This meant finding a diverse group of consumer leaders who could bring an informed consumer perspective to the research team and creating an environment where consumers and researchers could actively engage as peers in a professional and supportive environment. Consumer leader Sophy Athan convened the team to discuss the consumer impact of our research and the areas that would benefit from consumer input. We reflected on the value that consumers could provide, what we might learn from consumers and the opportunities created from a strong consumer partnership with our researchers.