CONSUMER ADVISORY PANEL REPORT

My time as Chair has faced significant change and challenges, including the COVID pandemic, new strategic direction of BCT and the transition of CEO’s. However, as I step down from my role as Chair of this wonderful panel, I want to express my deepest gratitude to each and every one of you for your dedication, hard work, and unwavering support. 

It has truly been an honour to work alongside such passionate and committed individuals including our members, our researchers, the operational staff, our donors and our trial participants. I’m excited for the future of CAP and have no doubt that the panel will continue to thrive, and I look forward to seeing the incredible impact CAP will continue to make in the years to come. CAP is now in a strong position to continue to represent patients by collaborating with our researchers to improve participation in clinical trials research and advocate for all those affected by breast cancer. We now have strong numbers with a blend of experience and youth, diversity and geographical expanse and a wide variety of disease profiles. This will enable us to provide a broad range of views when collaborating with our researchers and the organisation as a whole and ensure that the patient is always at the centre of our research.

CAP currently has 11 members throughout Australia and New Zealand. During the reporting period CAP has continued to evolve and has implemented a range of new processes to ensure the sustainability and effectiveness of the panel. We have developed a transition process for future appointments of the Chair and created a new position of Deputy Chair. We have expanded the CAP portal to provide members with a platform to provide them with the information, training and resources to enable them to undertake their role more effectively. We have implemented a more streamlined application process for new members and developed an induction process to support and educate them about Breast Cancer Trials and the role of the Consumer Advisory Panel. It is hoped that all of these new processes will assist in our ability to maintain a collaborative and engaged role within the organisation.

Our current CAP members are: Karen Alexander, Canberra (retiring); Merryn Carter, Melbourne; Rebecca Angus, Sydney; Emma Crowley, Auckland New Zealand; Laura McCambridge, Melbourne; Naveena Nekkalapudi, Melbourne; Emma Keegan (Emma passed away just before publication of this report and we extend our sincere condolesences to her family and friends); Katrina O’Doherty (Probationary – Adelaide); Kate McDonald (Probationary- Sydney); Leanne Francia (Probationary – Brisbane) and myself as Chair (retiring).

Due to family and work commitments Melissa Bell (New Zealand) retired from CAP in November 2024. We would like to thank Melissa for her incredible contributions over the past 8 years and her advocacy for BCT and clinical trials research. She was a strong voice for clinical trials, the Māori community and has previously represented CAP on the Scientific Advisory Committee.

I’d like to further acknowledge and thank Karen Alexander, who along with myself will be stepping down from CAP in July 2025. Karen had been a dedicated member of CAP for 9 years and a member of the Scientific Advisory Committee. Karen has been a strong advocate for BCT and clinical trials research and has brought a level of professionalism to CAP which has guided its evolution to what it is today. In my role Karen has been an incredible source of support and I can’t thank her enough.

I also want to recognise our experienced alumni, consisting of Leonie Young, Cheryl Grant and Carol Whiteside. These past members have played an integral part in the establishment and growth of CAP and from a personal perspective a great source of knowledge and peer support to both members and myself. Melissa, Karen and I will be honoured to be joining such an illustrious group of dedicated advocates who continue to support Breast Cancer Trials in their endeavours.

During my tenure I have been fortunate to work with two exceptional CEO’s, Soozy Smith and more recently Karen Price. Over the past 14 years I have worked closely with Soozy to rebuild CAP and ensure its sustainability within the organisation going forward. She ensured that our position within Breast Cancer Trials (BCT) grew to include being involved in all aspects of the organisation and the clinical trials process. Soozy was an incredible advocate and supporter of CAP and we will be forever grateful for her unwavering support which has enabled us to go from strength to strength. I also want to acknowledge Karen who has made the transition to new CEO extremely seamless. She offers the same level of support, opportunities for growth and I have enjoyed working together, albeit over a short period. CAP is in good hands and I’m sure will continue to flourish under Karen’s leadership and guidance.

I would also like to take this opportunity to formally acknowledge the Board for their continued leadership and dedication to CAP. Your guidance, vision, and commitment has been instrumental in driving our growth and development.

CAP has maintained its involvement throughout BCT and has members appointed to the Scientific Advisory Committee (SAC), SAC Sub Groups, Concept Development Working Groups, Trial Steering Committees, as Associate Investigators on grant applications and more recently as patient authors reporting on clinical trial outcomes. We are engaged heavily in the Annual Scientific Meeting, as part of the organising committee but more importantly presenting during sessions. Rebecca Angus presented during the Supportive Care Session at the 2024 ASM on “What is the End Point” in clinical trials research – A Patient’s Perspective” whilst I had honour of representing CAP at the Early Careers Training Day. The presentation was extremely well received and highlights the investment of Breast Cancer Trials not only in CAP but ensuring that the patient voice is included in the discussion. CAP has also continued to be involved in the quarterly BCT Q&As as panellists and guiding the topics in research to be discussed that are important to the breast cancer community. In the last 12 months these have included Is Less More – Rethinking Breast Cancer Treatment; Breast Cancer and Heart Health; The Role and Impact of Diet and Exercise; and Breast Cancer Research Update: Current progress and future pathway. CAP views these webinars as vitally important in disseminating evidence-based information to the community and highlighting the role of Breast Cancer Trials and the importance of clinical trials research.

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 are voiced the need to widen the inclusion and exclusion criteria to enable participation from under-represented groups including those from the CALD and indigenous communities.

Some other highlights of CAP participation over the past 12-months have included:

• ACTA 2024 Clinical Trials & Registries Symposium – Abstract Poster presentation Breast Cancer Trials Consumer Advisory Panel: An established model for improving consumer engagement in research
• Panelist, Lancet Breast Cancer Commission Golden Hour, San Antonio Breast Cancer Symposium Alamo Breast Cancer Foundation scholarship (SABCS), Rebecca Angus.
• American Society of Clinical Oncology scholarship
• Breast International Group Scientific Meeting, Belgium
• Invitation to present at the upcoming European Society of Medical Oncology Targeted Anticancer Therapies Congress, Hong Kong

As my time as Chair comes to its conclusion, I just wanted to highlight BCT’s support of the Consumer Advisory Panel and the role it plays in advocating for those affected by breast cancer but also clinical trials participants. In 2024 I was awarded the Alan Coates Award for Excellence in Clinical Trials Research. The award recognises an individual member of BCT who has made an outstanding contribution to BCT’s clinical trials research program. This was an incredibly humbling experience but one which I will be eternally grateful for. It emphasises the incredible value that Breast Cancer Trials places on CAP and the role which we play. It also underlines the inclusion of patients in research and that we are partners and collaborators in the same way as our researchers. Although I received the award it was accepted on behalf of all of CAP, past members, current members and those who are no longer with us. I personally feel grateful for the opportunity to be part of such an amazing organisation and confident that BCT’s commitment 26 years ago to have patients’ voices at the centre of research will continue and be held as the benchmark for others. Thank you.

Finally it with much sadness that I acknowledge the passing of newly appointed CAP member Emma Keegan. Emma joined CAP at the start of 2025 to provide a very important voice for those living with metastatic disease. Her unwavering support for BCT and in particular those impacted by advanced cancer was incredible and even when unwell and dealing with her own illness Emma was constantly asking what she could do to help. We thank Emma for all her efforts and send our sincere condolences to her family and friends. Her contribution to CAP and the research of BCT was invaluable and she will be dearly missed. Vale Emma.

Ms Leslie Gilham

Chair, Consumer Advisory Panel