Consumer Advisory Panel (CAP) update By Belinda Jago, CAP Chair
The ANZUP Consumer Advisory Panel (CAP) are a group of dedicated volunteers who have had a cancer diagnosis themselves or have cared for a family member/loved one with cancer. The CAP plays a vital role in the provision of advice and feedback from a community perspective on ANZUP’s research strategy and priorities, and on community engagement and support. We also provide advice on trial design and conduct, recruitment, and two-way communication strategies to support dissemination of research findings back to the community. CAP members are drawn from a broad range of backgrounds and have a wide perspective of the needs of cancer sufferers. The past 12 months have been a very anxious time for patients, carers and their families. They have had to deal with a cancer diagnosis as well as the added stress of the pandemic. However, the patients were certainly in good hands with health professionals and the health services providing their care. They were able to adapt delivery of care ensuring patient safety and clinical care was not compromised. We are extremely grateful to our dedicated health providers for their extraordinary efforts during this difficult time. The CAP continues to participate in ANZUP activities using virtual meeting platforms. In some respects, it gave us a greater opportunity to attend as travel costs and personal time were greatly reduced. We have actually had a really busy 6 months with the need to review a number of Participant Information and Consent Forms for new clinical trials.
We were also able to take part in the recent Renal Cell Carcinoma (RCC) Horizon Scanning Meetings. They are a series of structured activities and discussions to identify and explore the top research priorities for RCC research in Australia and New Zealand. From a consumer perspective we are very pleased to see this important activity being initiated for kidney cancer patients. Their future outcomes will benefit from pursuing the identified priorities. On a global scale, being in Australia/New Zealand has been the best place to be. We are very much looking forward to the future where vaccination programs will allow us to travel again and see the return of face-to-face ANZUP meetings that we all love so much. We have some special highlights in this edition of CAP members helping to support and promote the importance of clinical trials. Melissa Le Mesurier provided a very personal insight about her cancer diagnosis and treatment along with Shomik Sengupta who led her treatment and is an ANZUP Board member – please see page 34 for details and a must read. We also had a first for the ANZUP CAP. One of our longer-term members, Colin O’Brien and a prostate cancer patient, recently presented a concept (an idea for a new research project) at the Prostate Concept Development Workshop. The CAP were once again very active with the recent Below the Belt Move #YourWay fundraising campaign held in May through participating, fundraising and donating. It was a fun way to set some targets you wouldn’t normally, (I don’t usually walk that far each month!), and raise awareness and funds. For Victorians part of this challenge was once again done in lockdown.
A LITTLE BELOW THE BELT 9
