The power of patient organizations: From name change to changing the norms of clinical research.

In this episode of the Pep Talks podcast, hosted by the International Society for Patient Engagement Professionals (PEP), Robert Mitchell Thain, CEO of the PBC Foundation, shares his insights on patient advocacy. Thain discusses the challenges and rewards of leading a patient organisation, emphasising the importance of patient experiences in shaping advocacy efforts. He also highlights the need for patient organisations to collaborate with pharma companies, research companies, and other stakeholders to improve patient care. Thain shares his personal journey into patient advocacy, inspired by his mother's battle with primary biliary cholangitis (PBC). He also discusses the successful campaign to change the name of the disease from primary biliary cirrhosis to primary biliary cholangitis, which had significant practical and psychological benefits for patients. Thain concludes by encouraging patient engagement professionals to always strive to do the right thing and to utilise the knowledge and experiences of patients to improve their arguments and advocacy efforts.