S3-E50 – Focus on Patient Advocacy

Roger Green and Louise Campbell are joined by patient advocates Michael Betel, Wayne Eskridge and Robert Mitchell-Thain to discuss patient involvement in putting a dent in Fatty Liver. The group explores topics ranging from the economics of drug development to the future of digital therapeutics, all centering around the patient perspective.

One critical success factor for putting a dent in Fatty Liver disease – one we do not discuss very often on the podcast – is patient empowerment. In this episode, Roger Green and Louise Campbell are joined by patient advocates Michael Betel, Wayne Eskridge and Robert Mitchell-Thain to discuss patients’ perspectives and their contributions to improving healthy liver outcomes.

Focus on Patient Advocacy

Louise opens conversation by asking whether trial designs incorporate patient perspective from the outset or as an adaptation. Robert suggests there are a myriad of views held by industry partners, but ultimately emphasizes the value of harnessing the efforts of those championing patient-centricity. Michael shares his unique experience of having worked both for commercial pharma and non-profit organizations. He believes companies seek to remove barriers that limit access to treatment. Wayne notes the recent trend of industry including more patient input into development processes.

Roger spurs deeper investigation into the distinction between marketing perpetual treatment cycles and creating accessibility in receiving life-changing therapies. Robert carefully discloses his discomfort with industry and NAFLD, but not NASH. All three guests have improved their lived experiences with NAFLD without medical intervention. Robert correlates these successes with early interventional lifestyle changes, highlighting the importance of peer support. Later on, he also acknowledges the importance of trusted partnerships between clinicians, academia and other support organizations. Michael returns to his idea that drug companies seek measurable success in the treatment of patients, which does not equate to perpetual drug therapy. Wayne expresses concern for the potential of conflicting motivators to pit social values against the accountabilities a company holds for making market systems work.

Discussion shifts to panelists’ impressions on the phenomenon of digital therapeutics in the imminent future. Roger notes the economics and ability to make money in digital therapeutics will be different than in drugs, but the ability to support patients that way will be real. Robert connects the idea to his work with primary biliary cholangitis (PBC) and a health monitoring app the PBC Foundation developed for patients. Of the many benefits served, Robert notes the app’s contribution toward surveying the patient population, their journey and improving patient experience through patient feedback.

Roger turns to Wayne and Michael for something accomplished in the last year, consistent with the charter of their organization. Wayne introduces a project called the Wellness League hosted by the Fatty Liver Foundation. This project is designed as an ecosystem for the nonprofit community to address the challenge of distributing information and promoting on-ground education. Michael highlights the accomplishment of gaining Canadian charity status for the Fatty Liver Alliance.

Louise prompts further discussion on economic drivers of industry. The group investigates purchaser influence and patient advocacy represented at major meetings and events. Roger notes physician advocates considering the totality of disease are looking for ways to simplify and structure pathways and guidelines to best benefit the whole system. The guests outline their own contributions to these efforts from the position of patient advocate.

These are only a few insights from a far larger set that emerges during this discussion. Surf on for the full story.