The VCCC Alliance Value-Based Health Care Program facilitated a consumer-led research pilot project. This session will guide attendees through each phase of the research process, from initiation to publication, with insights from experienced consumers and researchers.
The session will also include a panel discussion to explore practical applications, experiences and address participant questions, fostering a comprehensive grasp of consumer-led research methodologies and their implementation.
Sheila Patel is a passionate advocate for childhood cancer. Her commitment to consumer advocacy began when her child was diagnosed with high-risk neuroblastoma at the age of 3. She actively volunteers with multiple cancer consumer groups. She currently serves as the Co-Chair of the Children’s Cancer Centre Carers Network at the Royal Children’s Hospital and is a member of the VCCC Alliance Cancer Consumer Advisory Committee. Professionally, Sheila is a Senior Research Fellow and an experienced Molecular Geneticist. Drawing from her personal and professional experiences, Sheila strongly advocates for the improvement of cancer care and long-term outcomes for childhood cancer survivors.
Following a long corporate IT career as CEO, and after two significant cancer diagnoses and treatments, Keith has turned his strategic focus into pro-bono activities in four key health consumer advisory spheres. They include extensive and ongoing involvement representing consumers in health service management and strategic governance committees at Royal Melbourne Hospital and within the Parkville Precinct; multiple cancer research program governance committees, primarily through VCCC Alliance and Peter Mac; medical undergraduate and consumer representative educational activities primarily through the University of Melbourne; and membership of a medical research foundation’s Advisory Board.
Recent cancer consumer research governance roles include the committee for the ‘implementation of the iCanEAT pathway for cancer consumers and health professionals’ which won the Safer Care Victoria 2022 Award for partnering in healthcare. Keith has been a joint author on recently published and presented manuscripts for this project, and a variety of others.
Sufi is a youth cancer survivor with a degree in Biomedical Science and current qualifications in mental health work, with aspirations towards studies in psychiatry. She is passionate about advocating for young people to improve their experiences within healthcare services. Sufi was co-chair on the Victorian and Tasmanian Youth Cancer Action Board, with the Victorian Youth and Young adolescent service at the Peter MacCallum Cancer Centre.
Sufi has been part of many co-design projects where she has helped develop age-appropriate resources and programs, providing a solid understanding of the challenges that young cancer patients face. She is particularly interested in investigating the barriers that patients with diverse backgrounds face when navigating the health system. As someone with a mental health diagnosis, Sufi is also able to advocate for young people in this population.
Jo is an original member of the VCCC Alliance Cancer Consumer Advisory Committee (CCAC) and currently Deputy Chair. She was a member of the Peter McCallum Cancer Centre Consumer Advisory Committee for 7 years, the Walter and Eliza Hall Institute (WEHI) Consumer Advisory Panel for four years and a current member of the WEHI Consumer Research Program.
Jo’s working life includes many years as a senior teacher of mathematics and several years as a school counsellor. She worked as the Hunter Breast Cancer Education Officer for Breast Cancer Trials in Newcastle where she also trained as a Genetic Counsellor with Hunter Genetics.
Jo is passionate about supporting cancer research and equitable cancer care, following her own lived experience both as a carer and patient. She strongly believes that consumers can provide valuable input into decisions about cancer research, policies and practice and can play an important role in improving cancer health outcomes for all.
Kelsey is a research coordinator working in the Gibbs Lab Personalised Oncology group at WEHI, coordinating research projects at Western Health, Footscray.
David Attwood
Member, Consumer-Led Research Group
Victor Namutwe
Member, Consumer-Led Research Group
Nora Moubarak
Member, Consumer-Led Research Group; Peter Mac Youth Cancer Action Advocate
