ESMO and evidence-based advocacy: Leading the science of patient engagement

In this episode of the Pep Talks podcast, Emma interviews Rachel Giles, an associate professor of internal medicine and president of VHL Europa. Giles shares her journey from a career in internal medicine, nephrology, and oncology to patient advocacy, driven by her personal experiences with a family affected by a tumour suppressor syndrome. She discusses her work as a medical journalist and medical science officer, and her long-term involvement in patient advocacy since 2003. Giles also talks about her research on the VHL tumour suppressor gene, a single gene mutation causing significant distress and being the main driver of kidney cancer. She highlights the importance of having members of patient organisations with a scientific background to help interpret medical literature. Giles also discusses the challenges and rewards of collaborating with pharmaceutical companies and the need for a common language between patients and professionals. She shares her experiences at ESMO, a European Society for Medical Oncology, and the importance of patient engagement in improving patient outcomes. Finally, Giles shares her strategies for overcoming obstacles in patient engagement, including educating medical professionals about the benefits of patient engagement.