Fifteen Victorians who have experienced cancer – consumers – have joined newly-established working groups to play an integral role in the $1.6 million Victorian government-funded statewide Cancer Consumer-led Research Program.
The program, announced in December 2023, aims to enhance the impact of integrating the lived experience to cancer care, research and education in Victoria.
The program fosters a unique collaboration harnessing the expertise of consumers and five entities in cancer control: VCCC Alliance, Monash Partners Comprehensive Cancer Consortium, Regional Trials Network Victoria, and Cancer Council Victoria. The research project is academically supported by the Collaborative Practice Centre, University of Melbourne.
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An expression of interest process in September called for diverse consumer voices to join the workings groups. The groups will support key activities across the program including consumer-led research, co-design and delivery of education modules, delivery of mentor training program, and amplification of effective engagement practices.
“We were heartened by the strong interest from consumers to be involved in the working groups for the Cancer Consumer-led Research Program,” said Pauline Ryan, Program Manager, Consumer leadership.
“Due to the high level of interest and expertise in the applications, the program is exploring additional opportunities to integrate the valuable experience of people who applied.”
The uniqueness of the program lies in its consumer-led approach, where consumers are not only actively involved but key decision-makers. With significant consumer representation across various roles and functions, including governance, consumer-led research, co-design and delivery of education modules, and mentors, the program ensures diverse consumer voices are at its heart. Most importantly, a statewide network of consumer leaders will be developed.
An established Consumer Leaders Group plays a central role in the program’s governance. These consumer leaders are pivotal decision-makers in the program, with representation as co-chairs on both the steering and working groups.
Harry Thomas, Consumer Leader Steering Group Co-Chair, said a consumer leadership program is needed to elevate lived experience expertise and capacity building into cancer-related research.
“To date there has been a limited systemic focus on building the capacity and expertise of consumers to serve as leaders, agents of change and research improvers despite this being recognised in the literature as an important co-creation role,” Mr Thomas said.
“Consumers can provide a platform for researchers and decision-makers to recognise people with lived experience, as consumers, in their healthcare, own their medical information, understand the value of evidence-based medicine, be better decision makers and be fully engaged as transformational partners or leaders.”
Together with the program’s consumer leaders, a new webpage has been developed to strengthen communication and outreach efforts.
After a successful tender process for the immersive Consumer Leadership Masterclass, the Health Consumer’s Centre (Deakin University) in collaboration with Peter MacCallum Cancer Centre were the successful service provider. The consumer leadership masterclass is a key component of the program which aims to build consumer capability. The program will be co-designed with consumers and piloted in 2025.
Three dedicated consumer liaison staff have been appointed to support consumers involved in the program. Based at Cancer Council Victoria, Monash Partners Comprehensive Cancer Consortium, and the Regional Trials Network – Victoria respectively, these roles are essential in ensuring that consumer voices remain central to program activities. They will also provide crucial support to consumers involved in the program.
2025 will be an incredibly exiting year for the program, as we pilot the co-designed immersive Consumer Leadership Masterclass with an associated mentor program and consumer placements for 20 participants.
