NCARD recently held its first Consumer Advisory Panel (CAP) meeting for 2022, after expanding its membership with the help of the WA Health Translation Network (WAHTN) last year.
By way of background, NCARD has always been involved with and sought the opinions of mesothelioma advocacy groups, community and government organisations and those with lived experience in this space. NCARD researchers have enjoyed a long and close working relationship with the Asbestos Diseases Society of Australia (ADSA), dating from before NCARD‘s inception as a federally funded Centre. NCARD’s inaugural director, Prof Bruce Robinson, was a founding director of the Bernie Banton Foundation and the Centre also built a relationship with Reflections. There have been several ADSA representatives on the Consumer Advisory Panel since it began meeting regularly with the NCARD research team several years ago to discuss planned research projects. Carole Kagi was invited to join the CAP in 2018.
In 2021 NCARD approached the WAHTN for their assistance to expand the CAP, and participated in a workshop conducted by the WAHTN with the NCARD team in 2021 looking at the role of consumer groups in research. The net needed to be cast wider to include more members with a range of different connections to, or lived experiences of, mesothelioma and asbestos disease issues. This is partly because the progressive and fatal nature of mesothelioma means that, unlike with other cancer groups which include survivors, mesothelioma patients, sadly, tend to be represented by those who have advocated for or cared for them. A range of voices thus provides a richer scope of experience.
The challenges of the first expanded meeting were technical, as a large group in many different locations met online due to the current COVID restrictions. New members Lizz Clarke from Reflections, and Corrine Naisbitt, joining from her home in Dunsborough, added to the conversation. With patient perseverance, a frank discussion proved that different voices, opinions and perspectives definitely enhance the possibilities of this Panel. There are clear benefits to NCARD research, from recognising the practical difficulties of attending hospital for multiple visits to participate in clinical trials; to the strategic perspectives of where consumers would like to see a focus on research efforts. We look forward to ongoing collaboration.
See our About Us page for an introduction to each NCARD Consumer Advisory Panel member.