Consumer Advisory Panel
Consumer Advisory Panel
Consumer Advisory Panel
Consumer Advisory Panel: Belinda Jago and Ray Allen
The ANZUP Consumer Advisory Panel (CAP) comprises a passionate team of volunteers who have either personally experienced a cancer diagnosis or have provided care for a family member or loved one with cancer. Our primary goal is to actively contribute to the advancement of genitourinary cancer treatments and outcomes through our unwavering commitment to clinical trials research. We proudly serve as the voice of the community, diligently assessing the value and impact of each clinical trial on the well-being of those affected.
The last few years of little face to face activity did not dampen our enthusiasm to participate across all of the ANZUP activities where we provide our thoughts and comments. However we were delighted to finally head back to our much looked forward to Annual Scientific Meeting in July 2022 very aptly titled – “No longer on mute”.
- 7 out of the 10 CAP members were able to travel to this Annual Scientific Meeting in Adelaide, marking the end of 3 years on Zoom. After 3 years on Zoom it was a very successful meeting for us as well as a great opportunity to personally welcome in person our two new CAP members, Paul and Tuan, who joined the CAP early in 2022.
- Our Sunday kicked off with a busy educational program. We caught up on recent developments and engaged in interesting discussions concerning the impact of COVID-19 on cancer patients. Topics such as diagnosis and treatment delays, the accelerated adoption of tele health and tele trials, took centre stage. Additionally, we brainstormed some ideas around the Cancer Australia metric for ANZUP to help improve clinical trial participation in under-served populations including Aboriginal and Torres Strait Islanders, culturally and linguistically diverse populations, and rural and remote populations.
- The CAP then attended and also presented at the Clinical Trials Symposium which was an excellent training program for ANZUP members.
- The afternoon was a mix of being involved in the Community Engagement Forum (CEF) and Master Classes. A highlight of the CEF was having David Pook and his patient Juliet De Nittis talk about decision making and treatment choices. Juliet, a participant in the ANZUP Kidney Cancer Trial – Unison, has since been officially welcomed as a member of our CAP.
- CAP Member Melissa Le Mesurier presented at the Sunday evening Symposium “Survivorship Unmuted” with excellent feedback being received on the session.
- Over the next two days of the Scientific Meeting members of the CAP were also included as chairs of sessions and provided a CAP update.
Overall, the meeting was truly exceptional, leaving us with a profound sense of fulfilment, reinforcing the value of our contributions and solidifying our vital role within ANZUP.
Other key activities in 2022/23 included:
The CAP was represented at all of the Ideas Generation Workshops (IGW) held this year with a mix of face to face and Zoom attendance. The IGWs offer the CAP a great opportunity to put the community voice forward right from the beginning of an idea being presented. We thank the membership for the positive feedback that we receive. We also look forward to seeing these “new ideas” progress over the coming months where we continue to have input through the various sub committees and working groups that all have CAP representation.
We were privileged to engage in the review process of 12 Below The Belt (BTB) Research Fund Grant Applications, alongside the evaluation of the new Synchrony Fellowship Award, which garnered an impressive 17 applications. We continue to use our well-refined discussion and ranking system. These reviews are an important part of what we do as Consumer Advisors in research. We constantly scrutinize the potential impact and benefits that the proposed research questions hold for patients. It is pleasing to note the strong alignment we have with the multidisciplinary team responsible for scientifically evaluating the grant applications. We eagerly await the outcomes of these research projects, as they hold the potential to significantly improve patient outcomes.
In March 2023 we were delighted to welcome Raewyn Manssen, a Bladder Cancer Patient from New Zealand, to our CAP meeting to get a better understanding of what we do. Following on from this, Raewyn has now joined our CAP and with her experience on a clinical trial as part of her “treatment” plan her insights into the new ideas being proposed will be invaluable in advancing our cause and helping others affected by bladder cancer.
Recent speaking engagements have proven to be highly effective in promoting the meaningful involvement of CAP at ANZUP. Throughout the year, we had the privilege of participating in the following events:
- “Consumers In Research Workshop” – This was held at Chris O’Brien Lifehouse to assist researchers in understanding the importance of engaging with consumers to provide input into their ideas.
- Webinar on “Consumer Involvement in Clinical Trial Design” – Monash Partners and Sydney Health co-hosted this webinar. The feedback received thus far has been overwhelmingly positive, highlighting how effectively the CAP is integrated into ANZUP’s diverse activities.
The CAP was actively involved in reviewing Patient Information and Consent Forms for the following trials:
- ANZadapt July 2022
- Short form ANZadapt – Study Patient Information and Consent Form review with different supporting documents to provide a more user-friendly experience from a patient perspective. It is great to see the push for change on the way as the graphics provide a much easier presentation of the trial rather pages and pages of words.
The CAP continues to support the membership and we are involved in many discussions with greater inclusion in grant applications and working groups for specific ideas. We really appreciate the respect and value that is given to our comments and suggestions. We are also grateful to be able to support the research of the talented and dedicated members of ANZUP who always strive to improve patient outcomes.
Under the exceptional leadership of Ian Davis as the ANZUP Chair and CEO Marg McJannett, along with their capable management team, ANZUP continues to experience growth and success. ANZUP presents us with numerous captivating and fulfilling projects to participate in. We eagerly anticipate the exciting opportunities that lie ahead, where we can actively contribute to advancing cancer research and making a positive impact on patient care.