Consumer: Chris Spencer finds out more
INFORMING: Consumers gain information
The Victorian Comprehensive Cancer Centre (VCCC) flagship collaborative initiative is the Research & Education Lead (R&E Lead) Program. Connecting organisations and disciplines, the 13 R&E Leads use their leadership, knowledge and networks to transform research discoveries into routine clinical practice.
Associate Professor Corcoran is the VCCC R&E Lead, Genitourinary. He holds positions at the Royal Melbourne Hospital, University of Melbourne and Frankston Hospital. In his R&E Lead role, Associate Professor Corcoran collaborates with investigators to develop tests to better predict prostate cancer prognosis and response to therapy, in order to develop new therapies for patients with high risk disease. PRECEPT – ProstatE CancEr Prognosis and Treatment, involves genomics, immunotherapy and health services research to establish genomic biomarker-based tests for shared treatment decision-making.
I have had several good experiences over the last few years working with consumers to coordinate and prioritise research.
For this project we are aiming to develop a prognostic test that will provide patients, at an early stage, with their prognosis expectation. This measure of expectation will enable clinicians and patients to make informed treatment decisions, decreasing side effects and increasing quality-of-life.
At the beginning of designing the research, consumers participating asked, ‘How good does the test have to be to impact decision-making?’ This question has become the benchmark for the project.
The key to developing the test is to find the acceptable balance between benefit and risk, consumer input into this has been invaluable. Focus groups will be asked to respond to different scenarios at different stages of the cancer journey throughout the test development to assess the balance and identify where patients can enact change.
For example, when a patient is first diagnosed with cancer, it is a difficult time for the person to make long-term decisions that might seem remote at the time but will have long-term consequences. The test intends to shift the goal posts and give patients the confidence to decide between benefit and risk.
Contributing to research design and development, as well as grant application is a lot of work for consumers. Putting patients with prostate cancer at the centre of our research activities has informed design.
Clinicians and researchers need consumers to be part of research to harness consumer ideas, priorities, connections and understanding. I would recommend that we consult early and broadly, what we think is a need in clinical research, might not be a patient need.
For research to be successful, direct clinical impact for the patient must not be too far down the track.