Consumer Advisory Panel Report

Whilst the pandemic has continued to have a wide impact throughout 2021-2022, Australia, New Zealand, and other parts of the world finally feel like they are returning to some sort of normality. Breast Cancer Trials (BCT) in collaboration with the Consumer Advisory Panel (CAP) have continued to adapt in the development and delivery of clinical trials research throughout this period.

Leslie Gilham is the Chair of the Consumer Advisory Panel.

Whilst some aspects of clinical trials have returned to the status quo, there were certain changes that were implemented during lockdowns and border closures to enable patients continued access to new and ongoing clinical trials during those difficult times. The introduction of eConsent videos, utilisation of telehealth for follow-up and to collect Patient Reported Outcomes, and the decentralisation of deliverables such as blood collection, have been embraced for future research.

CAP has played a significant role in formulating these improvements and believes that they have the potential to increase access and equity and enable participation in clinical trials research to a broader section of the community. CAP is committed to continuing to work with BCT to further develop its role in assisting with the facilitation of clinical trials but also developing strategies around ongoing consumer engagement and advocacy for BCT.

Over the past 12 months there has been some limitations to the operations of CAP with no face-to-face meetings being held. Whilst this has been challenging CAP has taken the opportunity to optimise the use of technology to improve our ability to undertake our current responsibilities and increase our footprint both locally and internationally. It has enabled members to play a more significant role in all aspects of BCT’s operations and increased the ability to collaborate on an international stage.

Recently CAP was invited to present at the Breast International Group Patient Partnership Training Workshop. This provided a unique opportunity to educate others on the importance of patient advocates in clinical trials research. It importantly gave CAP the opportunity to present on behalf of BCT and outline the history of CAP and the important role it plays in collaborating with BCT in conceptualising and delivering clinical trials. It is envisaged that these associations with International Clinical Trials Collaborative groups will continue into the future and enable CAP members the opportunity to network with their peers globally.

Locally CAP has continued to engage with the community by involvement in the dissemination of information via webinars and topic specific workshops. Members direct involvement in virtual Q&As has enabled the group to work with researchers to inform the community about not only the importance of BCT and clinical trials research but other topics that are uniquely aligned with a breast cancer diagnosis. These informative sessions have raised the profile of BCT and CAP, and are another positive that has resulted from the restrictions associated with the pandemic.

CAP members are committed to representing all those affected by breast cancer and particularly those participating in clinical trials. Members are continually updating their knowledge and skills to ensure that to the best of their ability they can represent all those affected by breast cancer, clinical trials participants and under-represented and culturally diverse populations. During this reporting period, they have continued to attend many oncology conferences virtually to learn about the latest in research and to network with researchers and consumers, both within Australia and New Zealand and across the world. This opportunity has broadened and enhanced the ability for CAP members to advocate for BCT, trial participants and to collaborate with researchers.

The IMPACT Advocate program has not been able to be held since 2019. The delay due to the pandemic has enabled BCT and CAP to undertake a review of the program and they are currently finalising a new format which is anticipated to be implemented in 2023. The new format will look to provide a more dedicated program focussing on engaging specifically with consumers who have the potential to become either future CAP member or Advocates for BCT more broadly in the community.

All current CAP members have had a breast cancer diagnosis and, in most cases, participated in a clinical trial. CAP has continued to focus on diversity in the choosing of new members and is confident this will provide a transparent and holistic approach and result in varied and dedicated appointments. Whilst recruitment over the past 12 months has been difficult due to the lack of face-to-face interaction with the IMPACT membership base and other networks, we have continued to engage with key stakeholders to address this issue.

CAP undertook an extensive recruitment campaign over a six-month period. BCT members were at the forefront of driving this campaign, which resulted in a number of applications and the appointment of three new members. Naveena Nekkalapudi, Emma Crowley and Josepha Dietrich are newly appointed and will bring diverse and unique backgrounds to the group and provide another layer of depth to CAP. Ros Day-Cleavin (NZ) has resigned due to personal commitments.

The current membership consists of:

• Karen Alexander, Canberra;
• Rebecca Angus, Sydney;
• Melissa Bell, Dunedin, New Zealand;
• Merryn Carter, Melbourne;
• Emma Crowley, Auckland, New Zealand;
• Josepha Dietrich, Brisbane;
• Leslie Gilham, Melbourne;
• Naveena Nekkalapudi, Melbourne;

It is with great sadness that CAP would like to acknowledge Adjunct Professor Linda Reaby AM, who recently passed after a short illness. Linda made a remarkable contribution to the BCT research program over many years and to improved treatments and care for all breast cancer patients. Linda was a great champion for patient involvement in research and was the inaugural Chair of the Consumer Advisory Panel. We all walk in her footsteps and thank her for paving the way in ensuring that consumers are partners in research. Vale Linda.

Adjunct Professor Linda Reaby AM pictured with Professor John Forbes AM and Professor Alan Coates AM

Thanks to Linda and all those that have preceded us, CAP is constantly evolving with increased involvement at most levels of the organisation. From clinical trial concept, design, development and implementation, through to fundraising and marketing. BCT must be congratulated for its’ ongoing commitment to consumer involvement, to ensure that the patients voice is at the fore and are recognised as partners in their endeavour to improve the outcomes of those affected by breast cancer.