Consumer Advisory Panel (CAP) Update

By Belinda Jago, CAP Chair

The ANZUP Consumer Advisory Panel, otherwise known as the CAP, consists of a group of people from the general community who have been touched by cancer. They may be a patient, cancer survivor, partner of someone who has had cancer or have been a carer to a family member or friend.

As the Chair of the CAP, I bring my own experience, as I was a carer to my daughter who died from kidney cancer at just 19 years old.

The CAP feels very privileged to provide consumer feedback to ANZUP, on behalf of the community, and we are made to feel welcome by the healthcare professionals on all the committees we are a part of. The CAP is integrated through all ANZUP’s research activities and participate in each of the disease specific subcommittees, the Scientific Advisory Committee, including strategic planning workshops and report regularly to the Board.

CAP MEMBER MICHAEL TWYCROSS AT ANZUP’S ASM, DISCUSSING HOW TO FIND REPUTABLE INFORMATION.

The CAP plays a significant role in reviewing the clinical trial Patient Information and Consent Forms for each ANZUP clinical trial. We give valuable feedback to the clinical trial investigators as these forms are an important part of the decision-making process for the patient and their participation on a clinical trial.

The CAP also takes part in ANZUP’s Below the Belt Research Fund reviews to ensure we provide community expectations around the research ideas put forward for funding by ANZUP members.

CAP members are supported through internal education sessions and other external training opportunities as they arise. Despite the difficulties of living through the COVID-19 pandemic we have continued in our roles using virtual technology and are pleased to see the return of face-to-face meetings and education sessions. I am delighted to advise that seven out of the ten CAP members were able to catch up in person at this year’s ANZUP Annual Scientific Meeting (ASM) held in July in Adelaide – and the event was aptly themed “no longer on mute.”

SOME OF THE ANZUP CAP AT THE ANZUP 2022 ASM.

The ASM was a fabulous three days and highlighted that while we have “managed” virtually, the value of live conversations and interactions cannot be underestimated. This meeting provided a key opportunity for CAP members to take part in education sessions to provide constructive input into ANZUP clinical trial research from a consumer perspective. We were given the opportunity to participate in various sessions throughout the three days of the ASM.

Each year, a Sunday session at the ASM focuses on education sessions for specific interest groups. This year it included:

• The CAP’s half-day education session for all CAP members, and we warmly welcomed two new CAP members – Tuan Hoang and Paul Zawa. We then participated and presented in a new session titled

‘Clinical Trials Research Symposium’. This was a fabulous session concentrating on the life cycle of a clinical trial and included a segment on “Putting it in Perspective – The Role of Consumers “.

• Multidisciplinary Master classes for trainee medical clinicians and allied health professionals were also part of the ASM program. These sessions focused on case studies from each disease type. As cases are discussed, CAP members were invited to be part of the discussion panel to provide the patient perspective on cancer treatment.

• ANZUP’s Community Engagement Forum (CEF), was another part of the ASM program that required input from the CAP. The CEF offers up-to-date information on ANZUP clinical trials and the benefits of being a clinical trial participant. Leonie Young, a member of the CAP chaired the CEF. • One of the highlights of the CEF was the inclusion of a powerful patient story. Juliet De Nittis shared her story about the benefits of considering a clinical trial as a treatment option. You can read more about Juliet’s cancer journey on page 62.

• Another highlight was the session, Getting the balance right with reliable information with CAP member

Michael Twycross and Quality of Life Subcommittee

Chair Associate Professor Haryana Dhillon, who discussed what to look for when dealing with a cancer diagnosis.

• CAP member Melissa Le Mesurier was part of a panel at the Sunday Evening Symposium, “Survivorship

Unmuted” and spoke about her experience on a bladder cancer clinical trial, both the pros and cons.

You can read more about this on page 22.

The following days of the ASM involved CAP members as session chairs to provide a CAP update to the delegates. These learning opportunities ensure the CAP have the best possible understanding of the technical design of trials, timing issues, and complexities around ethics and funding approvals.

Support for, and inclusion of the CAP at ANZUP ensures we are a committed and enthusiastic group, extremely interested in assisting with ANZUP clinical trials. As a CAP member, it is exciting to be part of this successful and growing organisation, turning an unwanted cancer experience into a positive outcome.

Please take the time to consider if you could be involved with ANZUP – share a story, your experience on an ANZUP clinical trial, or volunteer /participate at one of our fundraising events. We hope you enjoy this edition of the magazine.

BELINDA JAGO

CAP CHAIR