The Victorian Cancer Plan 2020-2024 promotes active consumer engagement in all funded research grants and fellowships. Consumers are also involved in evaluating grant applications to ensure public funding is given to projects that are valuable to the community. The National Health and Medical Research Council (NHMRC), has created guidelines for researchers looking to unleash new knowledge, perspectives, and opportunities by co-designing research initiatives with patients and carers. It is a move that many believe will enhance outcomes by focusing on what is important for patients.
Sophy Athan, Keith Donohoe, and Les Leckie are consumer advisors who were recruited to join a major research project at its start in 2019. The trio are members of the VCCC Cancer Consumer Advisory Committee (CCAC), but it is their direct experience with prostate cancer, long and successful commercial careers, and life and family experience that is a genuine asset to the project team.
Associate Professor Niall Corcoran is VCCC Research and Education Lead, Genito-urinary cancer, and the principal investigator (PI) on a prostate cancer three-phase study. The way in which consumers have been included in the study development provides a good model for others.
The ProstatE CancEr Prognosis and Treatment project (PRECEPT) involves genomics, immunotherapy, and health services research to establish genomic biomarker-based tests for shared decision-making in treatment. Collaborators have set out to develop a tissue and blood test that will predict the future risk of progression in men with prostate cancer at the time of diagnosis; new curative treatments in patients with high-risk disease; and new tests that will predict how patients will respond to treatment.
Conversations about the research project began with the CCAC well before it got underway. PI Niall says, “Bring in consumers when you have a good idea. Grant submissions tend to come together over an extended period, so rather than trying to retrofit after the fact, the best time to bring people on board is in the very early stages.”
Chair of the VCCC Cancer Consumer Advisory Committee, Sophy Athan was part of the funding panel interview, resulting in an Australian Government and Movember Foundation three-year MRFF grant of $4 million to fund the multi-site team of 18 researchers. Sophy continues to play an important role as the lead consumer representative on the research team and brings governance and reporting expertise to the table as well as a balance in gender and carer views.
No one person on the PRECEPT project is regarded as having a better idea than the other. Like any team doing productive work, individuals are valued for their unique skills and perspectives.
“Bringing consumers together with some of the local and international researchers at a dinner meeting was one of the first steps in removing barriers and assisting everyone to understand various points of view,” says Keith Donohoe. “We were also invited to the Asia-Pacific Prostate Cancer Conference, which added significantly to our knowledge of then-current research directions and progress, meaning our contribution could be even more effective.”
The integration of the consumer advisory group means there is an open and ongoing source of two-way information for all stages of the project, generating some exciting outcomes.
“We had input into the clinical trials ethics applications,” says Les Leckie. “It is important that information about the impacts of the treatment provided to patients and carers is very clear, and can be properly understood, especially if the trial involves leading-edge therapies or something that might be considered controversial.”
It is not commonplace to involve consumers in ethics applications, but these interactions can assist in determining the right approach to communicating with patients. For instance, a professionally-produced video may position a study as world-leading but could unwittingly prejudice or coerce participation. Inclusive discussions allow for the testing of ideas. Could aims be met, and greater equity achieved by having ‘easy English’ versions of the information to translate into multiple languages?
An aspect of the PRECEPT project is to develop companion biomarkers that predict response to systemic treatments in high-risk disease. “We assisted with the establishment of a consumer group to work alongside researchers developing and evaluating the biomarkers and were able to comment on the suitability of planned approaches,” says Keith. “Sophy was involved in selecting the team member responsible for developing the biomarkers, so trust and understanding began during the recruitment process. We now meet monthly for progress updates and to share views on consumer reactions and priorities of direction.”
Niall is thrilled to have the CCAC team involved. “We are designing initiatives to their specifications. They have enriched and informed the work in ways that make it truly accessible. Clinical trials can involve complex ideas and protocols and we gain great insight from consumer advisors on what has a useful impact on patients.”
“As humans, we have a broad range of personalities and ways of working. And we all tend to come with our perspectives and biases. Don’t be afraid to seek out and interact with a range of people. Collaborative relationships take time.”
Image: Members of the VCCC Cancer Consumer Advisory Committee at the 2019 Consumer Forum (L-R) Dr Joanne Britto, VCCC Consumer Engagement Manager, Heather Beanland, Les Leckie, Jo Cockwill, Sophy Athan, Keith Donohoe, Dr Dayna Swiatek, Victorian Cancer Agency, and Paul Baden.
