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CONSUMER ADVISORY PANEL

Members of our Consumer Advisory Panel provide a patient’s perspective in the development of trials and in the conduct of our research program.

Who are the Consumer Advisory Panel?

The Breast Cancer trials (BCT) Board of Directors established the Consumer Advisory Panel (CAP) in 1998 because it recognised the value and importance of consumer input to the planning and conduct of clinical trials research. Today, CAP has seven members from Australia and New Zealand who are committed to the BCT research program and its potential to benefit all women diagnosed with breast cancer, and those at risk. The CAP is chaired by Ms Leslie Gilham.

The input and insights provided by CAP members, some of whom have participated in one of our clinical trials, are integral to the research program of BCT. CAP members are members of the Scientific Advisory Committee (SAC) and its subcommittees helping ensure a consumer perspective is provided from the very early planning stage of clinical trials developed by BCT.

All protocols and relevant research documents, particularly patient information, and consent forms, are reviewed by CAP members who are also staunch lobbyists for Quality-of-Life assessments in appropriate clinical trials. Communication is open between CAP members and researchers resulting in improved patient materials providing more clarity and understanding for potential new clinical trial participants.

Listen to the Podcast

In this episode, you’ll hear from our CAP Chair, Leslie Gilham, as well as three of our members, Merryn Carter, Naveena Nekkalapudi, and Laura McCambridge, as they discuss the Consumer Advisory Panel of Breast Cancer Trials, their role, and what you can expect from being involved.

CAP members bring their own unique experience of breast cancer, networks, professional skills, advocacy experience and a true commitment to the clinical trials research process. Members participate on BCT committees, represent BCT on external committees and independently contribute to many breast cancer advocacy, research, fundraising and support initiatives.

CAP aims to:

  • Advocate for women who may be participating, or who have participated, in breast cancer clinical trials.
  • Provide BCT with a consumer perspective on relevant issues about clinical trials including recruitment, patient information for informed consent, new trial protocols and ethical issues.
  • Raise community awareness of breast cancer clinical trials and research.
  • Represent consumer views on behalf of BCT in government, community, consumer and research forums to promote the importance of clinical trials research.

CAP Chair

CAP is chaired by Ms Leslie Gilham, a passionate advocate for clinical trials, and a participant in the TEXT clinical trial. She became chair of CAP in 2018 and is an Associate Investigator on a number of clinical trials and research projects throughout Australia & New Zealand.

She is a member of the BIG 3-07 / TROG 07.01 DCIS Steering Committee, a member of the Breast International Group Patient Partnership Initiative, the Roche Global Breast Cancer Council and an advisor to the TILs International Working Group.

CAP Members

Current CAP members include:

  • Leslie Gilham, Chair
  • Karen Alexander
  • Merryn Carter
  • Rebecca Angus
  • Naveena Nekkalapudi
  • Emma Crowley
  • Laura McCambridge

PUTTING PATIENTS AT THE CENTRE OF RESEARCH

Hear from our Consumer Advisory Panel (CAP) as they discuss their personal breast cancer experiences, their motivations for joining the Breast Cancer Trials CAP, and the importance of providing a consumer perspective on clinical trials.

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Ms Leslie Gilham

Ms Leslie Gilham is the Chair of the Consumer Advisory Panel.

Contact

To contact the Consumer Advisory Panel, please email capenquiries@bctrials.org.au.

Email CAP
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Leslie Gilham

CAP Chair

“One of the things that is quite important with our research is that patients and participants know that there is patient voices involved in designing that trial.” Leslie is the Chair of the BCT Consumer Advisory Panel, and was diagnosed with breast cancer in 2009. She was a participant on the TEXT clinical trial.

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Karen Alexander

CAP Member

“All of us who have had a cancer diagnosis and had the treatment, we are all benefiting from those who’ve gone before us. The outcomes that we have are so much better and we are reaping the benefits of that research.” Karen is a member of the BCT Consumer Advisory Panel, and was diagnosed with triple negative breast cancer in 2011. She also carries a BRCA1 gene mutation.

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Merryn Carter

CAP Member

“When the diagnosis came through, the thing I used to think about was my son being 10, and is this little kid going to be without his mum? It was soul destroying. But as I understood more about the treatment, and that there was hope that I could beat it, I became resolved to beat it.” Merryn is a member of the BCT Consumer Advisory Panel, and was diagnosed with HER2-positive breast cancer in 2010.

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Rebecca Angus

CAP Member

“If I can assist in the future of young women and their outcomes I’m incredibly happy to participate and be involved.” Rebecca is a member of the BCT Consumer Advisory Panel. She is a senior podiatrist with a personal history of breast cancer, being diagnosed in 2018, at just 33 years old. At the time, she had an 11 month old son, so when she found a lump on day she assumed it was related to mastitis from breast feeding.

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Naveena Nekkalapudi

CAP Member

“We bring a perspective that the health professionals don’t have. We know what the treatments feel like, we know what the emotional impact is of the diagnosis itself and we have a passion to make sure that those who follow us as patients have a better experience.” Naveena is a member of the BCT Consumer Advisory Panel, and was diagnosed with triple negative breast cancer in 2014. She has experienced both short and long-term side effects from her treatment.

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Emma Crowley

CAP Member

“We know now that there are other longer term psychosocial impacts on people that I think are quite important. So having that consumer voice from the beginning means that those issues can be identified early.” Emma is a member of the BCT Consumer Advisory Panel, and was diagnosed with HER2-positive breast cancer in 2012, when she was just 24 years old.

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Laura McCambridge

CAP Member

“My diagnosis got me thinking on how much people had provided of themselves in the past to give me the treatment that I ended up getting, and I wanted to be a part of contributing to that.” Laura is a member of the BCT Consumer Advisory Panel, and is passionate about research with experience in clinical research coordination. She was diagnosed with breast cancer at 31 years old, and was a participant in the Breast MRI Evaluation Study.

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