"We are fostering a research environment that is transparent, inclusive, and truly reflective of the patient experience.”
Robyn Leonard, Founding Director, Brain Cancer Australia
Brain Cancer Australia Establishes Consumer Advisory Panel
After the shock of a brain cancer diagnosis and the brutal toll of treatment, you could be forgiven for thinking that survivors and their families would want to put the experience behind them.
Yet, despite the physical and emotional hardships they’ve been through, many ask: "How can I help others with brain cancer?"
One powerful way to make a difference is through consumer advocacy, where the experiences of patients and caregivers help shape research priorities and initiatives to better align with their needs and expectations.
As a consumer-led organisation, Brain Cancer Australia is constantly seeking to elevate the voice of patients by connecting consumers and researchers in meaningful and practical ways. That’s why we’re proud to introduce the five consumer representatives of our newly established Consumer Advisory Panel - Di Bowles, Nigel Lokan, Margaret Dimech, David Hewitt and Dimity Francis – each dedicated to using their experience with brain cancer to help others.
The panel will provide input into the design, implementation and effectiveness of the Australian Brain Cancer Registry and Opt Me In Platform. These groundbreaking research platforms are aimed at improving patient care through nationwide data collection and analysis, and improving patient access to clinical trials.
Consumer representatives will offer guidance on how data is classified, analysed, and reported, while also helping to identify underserved areas in need of support and resources. They will also advise on patient consent and data collection processes.
“Through this panel, we are reinforcing our commitment to fostering a research environment that is transparent, inclusive, and truly reflective of the patient experience,” said Robyn Leonard, Founding Director, Brain Cancer Australia.
Consumer representative Nigel Lokan is eager to share his unique perspective as a brain cancer patient, helping to bridge the gap between researchers and patients. “We have to work together. We can’t have researchers working in silos. If we do, we’ll never make progress.”
The consumer representatives are joined on the panel by Brain Cancer Australia’s Professor Lindy Jeffree, Dr Mythily Sachchithananthan and Robyn Leonard.
Consumer Advisory Panel Members (left to right, top to bottom): Margaret Dimech, Robyn Leonard, David Hewitt, Di Bowles, Nigel Lokan, Dimity Francis, Professor Lindy Jeffree and Dr Mythily Sachchithananthan.
