Rebels in Health – the Enemy is Disease
Susannah Fox’s “Rebel Health” on the power of Seekers, Networkers, Solvers, & Champions in driving patient-led innovation & the communal fight against disease. Full 36-min episode on YouTube Two five-minute clips on YouTube. Click here to view or download the printable newsletter Contents Episode Proem Rebel Health by Susannah Fox As a student of advocacy and activism, I draw warmth from the heat of others’ passion, marvel at the diversity of origin stories, and burst with curiosity about what might come next. How did they start on this journey, and why do they persist? I’ve been a nurse for 50 years. One of the best things about nursing for me was the license to be nosy – for a brief time – a visit or a stay. This nosiness melds nicely as a podcaster for an episode. I often ask guests, “When did you realize health was fragile?” Another student of advocacy and activism is our guest, Susannah Fox. Susannah is a health and technology strategist. Her book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care , has just been published by MIT Press. She is a former Chief Technology Officer for the U.S. Department of Health and Human Services, where she led an open data and innovation lab . She has served as the entrepreneur-in-residence at the Robert Wood Johnson Foundation , and she directed the health portfolio at the Pew Research Center’s Internet Project . Podcast intro Welcome to Health Hats, the Podcast. I’m Danny van Leeuwen, a two-legged cisgender old white man of privilege who knows a little bit about a lot of healthcare and a lot about very little. We will listen and learn about what it takes to adjust to life’s realities in the awesome circus of healthcare. Let’s make some sense of all of this. Health Hats: Susannah Fox, how are you? It’s so good to see you. I’ve been looking forward to this. You’ve been my idol for a long time. I first learned about you when you were at Pew Research Center , and I thought your perspective and research were so helpful. Realizing the Fragility of Health When did you first realize health was fragile? Susannah Fox: Wow. The first time I realized that health was fragile was when my dad was a flatliner on the table at the hospital after his heart attack. He was in his fifties and someone who, to anyone who looked at him, would’ve thought he was a health nut. He went four miles three times a week. He was fit. He loved to hike. He was a mountain climber. And yet he had genetically high cholesterol and a hidden, blocked artery. So, they luckily were able to revive him, and he had open heart surgery and lived long enough to then get kidney cancer in his sixties and melanoma in his seventies. My dad was my model for lifelong health and perseverance. I love this question because it explains how you learned that health is fragile. But then also what? What happened when you learned that health was fragile? For me, it was seeing my dad persevere to regain his health each time he had a setback. Health Hats: That’s admirable. Transition from Research to Activism Health Hats: You had these experiences and are now in activism. How did that path happen? How did you get where you are now? Susannah Fox: I don’t think of myself as an activist. I think of myself as a researcher and a strategist who collects data, studies the landscape, and then tells the truth about what I see. I want people to enter a landscape with an understanding that if they build something on the frontier of healthcare and technology, they must build it on sound foundations. They need to understand the truth of the situation. However, I evolved as a researcher when I started this work and met Tom Ferguson , my mentor when I was working at the Pew Research Center for Lee Rainie . We hired Tom as an advisor. I went to Tom to understand the future of healthcare and technology. He said you must spend time with patients. They are the hackers, rebels, and cowboys on the frontier, bending tools until they break. I started s