Consumer Advisory Panel
Understanding the lived experience of melanoma and skin cancer
Consumers are active partners in our research. Their valuable contributions help investigators to better understand the lived cancer experience and work towards patient-centred outcomes. By proactively engaging with consumers and incorporating their feedback throughout the entire clinical trial lifecycle, we are delivering real-world results that prioritise patients.
To improve our engagement with consumers we formed a new Consumer Advisory Panel (CAP) in December 2021. Led by Alison Button-Sloan, a melanoma consumer advocate with nine years’ advocacy experience, our CAP includes members from metropolitan and regional towns throughout Australia and a representative from New Zealand.
The CAP meets four times per year and discusses consumer-led research, clinical trials and funding opportunities to support consumer engagement. The CAP also participates in MASC Trials scientific events, fundraising and awareness activities.
MASC Trials Consumer Advisory Panel
CAP Chair – Victoria
Alison has nine years’ advocacy experience, is a stage II melanoma survivor, and has had basal and squamous cell carcinomas. She is a member of many consumer and research organisations, including the Cancer Council (Australia) Melanoma Guidelines Management Committee, the Victorian Cancer Registry and Melanoma Research Victoria. Alison has co-authored journal articles with leading clinicians and is an experienced associate investigator on studies and clinical trials.
CAP Deputy Chair – Victoria
New South Wales
With over 30 years’ marketing and advertising experience and being a stage IV melanoma survivor, Anne is passionate about bringing about a change to our ‘sunburnt Aussie’ culture. She shares her story with the marketing and advertising industry and is actively lobbying for the inclusion of Sun Safe advertising guidelines.
Deborah has a lived experience with metastatic melanoma, basal cell carcinoma and squamous cell carcinoma. She has been a panellist on numerous webinars providing advice and hope to people with metastatic melanoma and brain metastases. Deborah has helped to raise funds for a new technology to treat brain metastases and she is also a volunteer with Melanoma Patients Australia.
Prof Jonathan Pincus
Jonathan was diagnosed with Merkel cell carcinoma in 2014. He has been Chair of the patient advocacy group for the Australasian Merkel Cell Carcinoma Interest Group (AMIGOs) and advocated for Merkel cell carcinoma patients to access immunotherapy via the Pharmaceutical Benefits Scheme. Jonathan was an invited speaker at the 2017 World Melanoma Congress. He is also a Visiting Professor of Economics at the University of Adelaide.
Tara was diagnosed with stage IIb nodular melanoma in 2017, then in 2021 she became stage IV. Tara was involved in a clinical trial, with a complete response to treatment. She has a patient level experience with being on a clinical trial. Tara is also a member of the Melanoma Patients Australia group.