From Patient Involvement to Patient Leadership - Donna Cryer, JD and Chief Patient Officer

From Patient Involvement to Patient Leadership: A Conversation with Donna Cryer, JD

Real Pharma, hosted by Na-Ri Oh and Ian Wendt

Episode Summary

As AI moves deeper into drug development, from trial design to evidence generation, the more pressing question isn't what the technology can do. It's who has the authority to decide how it's used. In this episode, Na-Ri and Ian sit down with Donna Cryer, JD, founder of the Global Liver Institute, longtime FDA patient representative, and the person credited with creating the Chief Patient Officer role in Pharma. Donna draws a hard line between patient involvement and patient leadership and makes the case that one changes outcomes while the other is often just theater.

About Donna Cryer

Donna Cryer is a lawyer, patient advocate, and two-time (arguably four-time, counting interim roles) CEO who has spent decades pushing patients from the margins of drug development into governance roles with real authority. She was diagnosed with inflammatory bowel disease at 13, which led to a rare autoimmune liver disease and a liver transplant in her twenties. She founded and led the Global Liver Institute for a decade, serves as an FDA patient representative on advisory committees, sits on the board of PathAI, and built the framework that became the pharmaceutical industry's Chief Patient Officer role.

What We Cover

[00:00] Intro — Framing the episode: patient leadership in a moment when pharma is becoming more data-driven and AI-enabled, and why the real question is one of authority, not just capability.

[02:19] What shaped Donna's philosophy — How a decade building the Global Liver Institute, and a career of being one of the only people in the room who knows where the liver actually is, shaped her approach to patient leadership.

[05:33] Liver disease and stigma — Why most of what people think they know about liver disease is wrong, how stigma shows up differently across hepatitis B, hepatitis C, and cirrhosis, and how Donna worked to change CPT coding so mash patients weren't buried under cardiovascular or diabetes diagnoses.

[07:34] Donna's own story — Diagnosed with IBD at 13, an autoimmune liver disease in her twenties, and a transplant that gave her a kind of authority no amount of professional training can substitute for.

[11:22] Defining patient centricity — Donna's litmus test: did something actually change because a patient was in the room? If nothing changed, it wasn't patient engagement, no matter what the meeting deck says.