Consumer Advisory Panel Report

As we commence our 25th year, I would like to take the opportunity to acknowledge all our past members and those that continue to represent patients in clinical trials research.

In the beginning, Consumer Advisory Panel (CAP) members had to work hard to be accepted because it was a very new concept. We have come a long way within the organisation representing BCT locally and internationally, at fundraising events, recording promotional videos or eConsents, or assisting with the development or reviewing of all forms of documentation, including Protocols and Patient Informed Consent Forms.

This would not have been possible without the hard work of our predecessors but also the unwavering commitment of BCT to have consumers as the focus of their strategic planning and at the forefront of their research. This collaboration has enabled CAP to go from strength to strength and play a pivotal role within the organisation, whilst not losing its independency or focus on the fact that we represent all those who have been impacted by breast cancer including participants of clinical trials and those more broadly throughout the community.

The Consumer Advisory Panel has continued to evolve in 2023/24. In the last reporting period CAPs role within BCT has continued to grow, with members currently appointed to the Scientific Advisory Committee, SAC Sub-Committees, Concept Development Working Groups, Trial Steering Committees and as Associate Investigators on grant applications. As part of the changing landscape and importance of consumer engagement, CAP has also continued to be involved in the Annual Scientific Meeting (ASM) organising committee and presented at the 2023 ASM. Karen Alexander, a CAP member since 2017, presented on “Emerging Priorities – The Need for Consumer-Led Research”. The presentation was extremely well received and informative for those who attended the session and as a result, CAP has been included to present in the Supportive Care session at the 2024 ASM in Cairns.

CAP has also continued to be involved in the quarterly BCT Q&As as panellists and providing advice on hot topics in research that are important to the breast cancer community. In the last 12 months these have included Breast Cancer in Māori, Pasifika and Indigenous Communities, Triple Negative Breast Cancer and Breast Cancer and Fertility. Along with the Q&A’s, CAP has assisted with developing new materials and virtual information to ensure that those interested in clinical trials can easily access the resources they need.

CAP members have extensive networks within the cancer community and a commitment to advocating for clinical trials research. Members have continued to expand their knowledge of clinical trials research currently being undertaken by BCT, their collaborative groups and around the world. Along with having a representative on the Breast International Group Patient Partnership, during the past year members have successfully obtained scholarships to the American Society of Oncology Annual Meeting in Chicago and the San Antonio Breast Cancer Symposium in San Antonio.

CAP would not be able to undertake this level of professional development without the support of BCT and the rate of successful applications highlights the standing CAP and BCT has on the international stage.

We continue to focus on inclusiveness within our membership and have recently appointed a new member, Mieka Tabert. Our commitment to diversity is highlighted by the appointment of Mieka who has a lived experience of metastatic breast cancer and resides in Tasmania. Not only does she bring a wealth of knowledge due to her personal experience, she is also acutely aware of the challenges faced by those living in a rural and remote areas in particular, as it relates to treatment options and access to and participation in clinical trials. The addition of Mieka will continue to provide a broad demographic within our membership base within Australia and New Zealand to ensure that we can best represent all those affected by breast cancer and advocate for clinical trials research throughout both countries.

Our current CAP members are: Karen Alexander, Canberra; Melissa Bell, Dunedin New Zealand; Merryn Carter, Melbourne; Rebecca Angus, Sydney; Emma Crowley, Auckland New Zealand; Laura McCambridge, Melbourne; Mieka Tabert, Hobart; Naveena Nekkalapudi, Melbourne; and myself as Chair.

It’s with great sadness CAP would like to acknowledge the passing of Jenny Bryce. Jenny was a member of the panel for almost 10 years retiring in 2012 and was a valued member of the alumni. She was a highly regarded and respected advocate and although none of the current members had the opportunity to work with Jenny, we are forever grateful of the legacy she has left in improving the lives of those affected by breast cancer. Vale Jenny.

CAP has continued to advocate for participation in clinical trials research and our role has never been more important as clinical trials continue to become more targeted to specific patient populations. In the past year there has been a focus on trials investigating de-escalation or treatment optimisation, radiation therapy, immunotherapy, surgical techniques, pathology, new biomarkers, ctDNA, supportive care, prevention and the introduction of AI. This has seen our input become more central to the development of these specific trials to ensure that the needs and voice of the patient is at the forefront of this research. We have also continued to support the decentralisation of trials to improve equity and access for patients living in rural and remote areas, and to widen the inclusion and exclusion criteria to enable participation from under-represented groups including those from the CALD and Indigenous communities.

A highlight over the past 12 months has been the establishment of the American Society of Clinical Oncology statement and recommendations for Assessing Ovarian Toxicity in Cancer Clinical Trials. CAP wants to congratulate Dr Wanda Cui, a member of BCT for leading this work and for engaging with CAP in the initial stages of this project. This highlights the important role CAP members have in collaborating with researchers to improve the outcomes for those participating in clinical trials and beyond. We welcome the recommendations noting the need to understand the long-term impacts of cancer therapies on ovarian function and fertility, and are excited that CAP played an important role initially in assisting Dr Cui to facilitate this outcome on the global stage.

Whilst the past 12 months have been extremely busy for CAP, we are committed to clinical trials research and supporting BCT in improving outcomes through scientific based evidence. Over the next year, as some of our current members tenure ends, we will seek to appoint new members with the same level of passion and dedication to save more lives from breast cancer and improve the quality of life for all those affected.

I would personally like to thank my fellow CAP members, the researchers, all the staff at BCT, our supporters and those participating in clinical trials, for their passion and for making a difference for current and future generations.

Thank you.

Ms Leslie Gilham

Chair of the Consumer Advisory Panel