CONSUMER ADVISORY PANEL

2022/23 has seen the re-engagement of clinical trials research both within Australia and New Zealand and across the globe. Consumer Advisory Panel (CAP) members have been reinvigorated with a renewed sense of purpose and focus.

Whilst the ongoing pandemic has been challenging, over the past 12 months CAP has pivoted to a more inclusive, educated and engaged panel to strengthen our position within the organisation and clinical trials research. Our role has continued to evolve with members now being engaged within all aspects of Breast Cancer Trials (BCT). With clinical trials now involving less numbers and a more targeted approach, CAP’s role has never been more important in ensuring that the patient is at the forefront of our researchers’ minds. CAP continues to advocate for more inclusive clinical trials including the way they are delivered to ensure accrual rates are achieved but more importantly that patients are routinely offered clinical trials as part of their care.

As previously reported a number of deliverables that were established during the pandemic have been maintained such as eConsent, digital patient reported outcomes and telehealth. CAP will continue to focus on diversifying ways that BCT can provide access to and delivery of clinical trials to the broader community. It will also continue to advocate for under-represented groups and barriers to participation including those that live in rural and regional areas, our indigenous populations, those from CALD communities and those that identify as LGBTQIA+.

During this reporting period we have continued to develop with BCT more educational resources in multiple languages, eConsent videos, trial educational videos and has had ongoing involvement in quarterly Q&A’s. Recently CAP has been approached by BCT to develop a project on Consumer-Led Research in Supportive Care. Whilst in its infancy CAP is looking forward to being given this unique opportunity to undertake research with key stakeholders to inform and develop clinical trials research within this area.

CAP’s reach has continued to broaden during 2022/23 with collaboration both locally and internationally. During this period CAP members have been awarded scholarships to the American Society of Clinical Oncology Annual Meeting and the Alamo Foundation/San Antonio Breast Cancer Symposium. Our engagement with the Breast International Group has continued to evolve with attendance at their Virtual Scientific Meeting, reviewing of upcoming trials, appointments to Steering Committees and attendance at their patient educational sessions. CAP’s profile continues to gain recognition on the international stage with numerous organisations now engaging with members on a regular basis. These include the National Clinical Trials Network (US), Canadian Cancer Trials Group, National Cancer Research Institute (UK) and TILs International Working Group, along with patient organisations such as International Experience Exchange with Patient Organisations. Recently CAP had the opportunity to present at the Annual IEEPO two-day forum speaking to Equity and Inclusion in Clinical Trials, highlighting the efforts being made by BCT. We have also welcomed the opportunity to collaborate with Reach to Recovery International and locally with Breast Cancer Network Australia and Breast Cancer Aotearoa Coalition.

All current CAP members have had a breast cancer diagnosis and, in most cases, participated in a clinical trial. In the current reporting period CAP has looked to diversify their membership and continued to engage with all key stakeholders to ensure that the membership appointments are staggered to ensure continuity of numbers and experience. Our current membership consists of members that have varying age, tumour, treatment profiles and ethnicity demographics. CAP is grateful to BCT members for their continued support by nominating possible candidates who have an interest in clinical trials research. This along with CAP’s own networks has enabled us to expand to eight members with CAP looking to appoint an additional two members in the second half of 2023.

Josepha Dietrich who was probationally appointed in 2022 has stepped down due to relocating overseas, however she has been replaced by Laura McCambridge who is a current trial participant located in Melbourne.

The current membership consists of:

• Karen Alexander, Canberra
• Melissa Bell, Dunedin, New Zealand
• Merryn Carter, Melbourne
• Rebecca Angus, Sydney
• Leslie Gilham, Melbourne
• Emma Crowley, Auckland, New Zealand
• Naveena Nekkalapudi, Melbourne
• Laura McCambridge, Melbourne

It’s with great sadness CAP would like to acknowledge the passing of Sheryl Fewster and Jennifer Bryce. Sheryl was a member of the panel from 2003-2018 and Jennifer from 2002 – 2012. Their efforts greatly improved the lives of those affected by breast cancer. We will miss them deeply and will be forever indebted to their tireless work and the positive affect they had on all our lives. Vale Sheryl and Jennifer.

CAP’s role is constantly evolving. From clinical trial concept, design, development and implementation, through to strategic planning, Board presentation, fundraising and marketing, and now a possible consumer-led project. We are true partners in research and are grateful for the value and importance that BCT has placed on our involvement within the group.

CAP is cognisant of the progress that has been achieve to date but is also aware of the work that still needs to be done. Thanks to the legacy left by Sheryl and Jennifer, and those who have come before us, we will continue to represent all those affected by breast cancer and collaborating with BCT on patient focussed research.

Leslie Gilham

Chair

BCT Consumer Advisory Panel