Patient advocates share insights at BDI Symposium
Monash Biomedicine Discovery Institute (BDI) recently hosted its inaugural Consumer and Community Involvement Symposium bringing researchers and patient advocates together.
Consumer engagement is gaining momentum, yet researchers often face uncertainty about how to initiate the process. Furthermore, having consumers participate in research by sharing their insights is critically important to inform research direction and priorities. This symposium addressed each of these topics.
Organised jointly by the Mid Career Researcher Collaboration and Advocacy Subcommittee and the BDI Consumer and Community Involvement program, the symposium brought researchers and patient advocates together to discuss how they met, their shared interests in research, and their tips for maintaining bidirectional relationships.
Ms Wendy Jenkins, who was awarded a Medal of the Order of Australia (OAM) in June 2022 'for service to community health, particularly lung transplant research', was interviewed by Dr Nicole Mifsud, a BDI Group Leader in Clinical Immunology. Ms Jenkins is a lung transplant survivor of more than 16 years and co-founded the Lungitude Foundation with her husband Gordon Jenkins.
Ms Leslie Gilham was interviewed by Associate Professor Karla Hutt and Dr Amy Winship who are researching strategies to optimise fertility and endocrine health in female cancer survivors. Ms Gilham is a breast cancer survivor, Chair of the Consumer Advisory Panel for Breast Cancer Trials, and Associate Investigator on a number of clinical trials and research projects throughout Australia and New Zealand.
A common theme of the presentations was how consumers and researchers can learn from one another. For consumers, this includes a deeper understanding of the practicalities and challenges of medical research. For researchers, this includes a broader perspective on real-world clinical challenges and how they can shape research vision.
Monash BDI is grateful to Ms Jenkins and Ms Gilham for generously sharing their stories, and also thanks the speakers and staff who made this event possible.
If you’d like to be involved with the institute’s Consumer and Community Involvement initiatives, please contact bdi-engagement@monash.edu.
About the Monash Biomedicine Discovery Institute
Committed to making the discoveries that will relieve the future burden of disease, the Monash Biomedicine Discovery Institute (BDI) at Monash University brings together more than 120 internationally-renowned research teams. Spanning seven discovery programs across Cancer, Cardiovascular Disease, Development and Stem Cells, Infection, Immunity, Metabolism, Diabetes and Obesity, and Neuroscience, Monash BDI is one of the largest biomedical research institutes in Australia. Our researchers are supported by world-class technology and infrastructure, and partner with industry, clinicians and researchers internationally to enhance lives through discovery.