Event Topic:
Consumer engagement in research is the active involvement of people with lived experience of a health condition — such as patients, carers, and family members — in shaping, guiding, and contributing to research. In this Q&A webinar, Brain Tumours Online have teamed up with the Brain Cancer Centre to introduce you to a fantastic panel of people who are involved in brain cancer research, including three ‘consumers’ with personal experience, a brain cancer researcher, and the Brain Cancer Centre coordinator who supports the Consumer Program.
There are many different ways that ‘consumers’ can be engaged in research, such as:
- priority setting and early design of research projects,
- contributing to grant writing or reviewing research proposals,
- being active members on research advisory committees,
- providing guidance on appropriate language in community-facing resources,
- providing lived perspectives to interpret research results,
- sharing lived experiences and involvement in research via webinars or at other public events,
- … and many other ways and activities!
At the Brain Cancer Centre, their goal is to ensure research is done with and by people affected by brain cancer, enabling them to actively contribute to projects beyond simply being participants in a study or clinical trial. Through this webinar we hope you will gain some insight into what the role of a ‘consumer’ in brain cancer research looks like, and whether it might be something you would like to consider being involved in, now or in the future.
About our webinar guests:
- Host: Samantha Chandler was primary carer for a close relative who died, aged only 38, after living with a GBM for almost 12 years. Samantha was appointed as a member of the Brain Cancer Centre’s Research Advisory Committee in 2021 and brings her perspective as a carer to enhance the work of both the Jenkins and Brain Cancer Research labs.
- Panel member: Melissa Lavender was diagnosed with a medulloblastoma in 2020 and is now five years cancer free. She has been a consumer participant since March 2023. She got involved because she wanted to help other patients as much as she can.
- Panel member: Kathy Minas has been a Consumer at WEHI for more than 9 years now. Her motivation is largely impacted by what she observed and experienced as a carer for her husband who succumbed to a rare GI Cancer in 2014. She wants her involvement to have a tangible impact on the therapy options, treatment and care of those that will be dealing with the challenge of rare cancers and notably cancers that have seen little improvement in survival rates over time.
- Panel member: Dr Jim Whittle is a Medical Oncologist at the Peter MacCallum Cancer Centre, Head of the Brain Cancer Research Lab at Walter and Eliza Hall Institute for Medical Research (WEHI) and Joint-Head of Research Strategy at the Brain Cancer Centre. Jim is also part of the Brain Tumours Online team.
- Panel member: Linda Hawkins supports the Brain Cancer Centre Consumer Program in her role as Coordinator, helping to ensure the lived experience and consumer perspective is embedded in the Centre’s work.
Links to relevant resources:
Interested in finding out more about becoming a consumer in brain cancer research?
- Brain Cancer Centre Consumer Program. Panellists in our webinar today mentioned the Brain Cancer Centre Consumer Program that they are involved in. For more information on this program, please visit the Resources page on the Brain Cancer Centre website and scroll down to the heading ‘Consumer Program’ for more info and to contact their consumer program coordinator.
- VCCC Consumer engagement resources. In Victoria, the Victorian Comprehensive Cancer Centre (VCCC) has a great website full of practical information and a toolkit to help both researchers and consumers to form successful and rewarding research partnerships. You can find out more on the VCCC Consumer Engagement website.
Where else will you find consumer engagement programs to contribute to brain cancer research?
- Consumer engagement and research partnership programs take place in many research institutions and universities around Australia, not just through the Brain Cancer Centre and WEHI. We haven’t provided an exhaustive list here. Some organisations have more formal support programs in place at the institutional level, others may organise consumer engagement programs at the individual Department or Research Laboratory level.
- If you are interested in becoming involved in research as a consumer, you could consider contacting any Australian health/medical/cancer research institute or university that is involved in brain cancer research in your state or nearest city and asking if they have a consumer engagement program or coordinator. If you tell the doctors in your treating team that you are interested in participating in research as a consumer, they might also be able to connect you to the relevant consumer engagement coordinator at the institutions they have connections with.
Video:
The webinar was recorded live on 22nd October 2025. The recording is now available to watch. If you have any feedback about the video, or have topics to suggest for future webinar, please complete this short webinar video feedback survey.
Please note: these webinars are for education purposes only and should not be taken as individual medical advice. Consult with your healthcare team to find out what approach is best for you.