Unleashing Patient Innovation with Susannah Fox
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What is the patient‑led health revolution and why does it matter?
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You're listening to the Nocturnous Conversations. I'm Emily Silverman. What would you do if the medical system couldn't provide the answers you needed? Or worse, the answers your child needed? Would you wait and hope for a solution, or would you take matters into your own hands? Across the world, patients and caregivers are stepping into the role of innovators, hacking into their own medical devices, inventing new solutions, and building communities to solve problems that traditional healthcare can't or won't. This quiet revolution is reshaping medicine, and at its heart is the belief that patients are not just passive consumers of care. They're leaders, inventors, entrepreneurs, connectors. Today we're diving into this movement with Susanna Fox, the author of the book Revel Health: A Field Guide to the Patient-led Revolution in Medical Care.
Susanna is a health and technology strategist and 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. Susanna has also spent decades uncovering stories of talented and motivated patients who didn't wait around for scientists, doctors, researchers, or business to solve their problems, and instead solve their problems themselves. I really enjoy this conversation with her, in which we discuss the type one diabetes patients who liberated their own data from their continuous glucose monitors and invented a closed loop artificial pancreas.
The multiple myeloma patients who advocated for a research study about dexamathasone that doctors and scientists thought was kind of boring, but actually ended up shaking up the standard treatment protocol. The spontaneous invention of a button called condition H, which a patient rather than a doctor or nurse could press to effectively call a rapid response if they felt like something was wrong with their loved one, online disease communities, paywalls for taxpayer-funded medical research, and the way that Susanna incentivized innovation with competition and prizes from her role inside the White House. This was a very exciting conversation and a very humbling conversation, and I hope you enjoy it as much as I did.
But first, take a listen to Susanna reading from her book, Rebel Health.
The first time I faced a health crisis in my family, I failed. I had been tracking the patient-led revolution for a few years, gathering evidence of how useful it is for patients, survivors, and caregivers to seek answers, pool resources, and solve problems together. But I did not think that I needed to tap into that vein of wisdom and innovation for myself. Maybe you are like me. You think you've got it all together in terms of your health? When you have a question, you Google it and the information you need generally pops up. If you're lucky, you already have a doctor you trust and friends who pitch in with practical advice and emotional support. It's easy to assume you have the best available knowledge.
I did. When my younger child was diagnosed with life threatening food allergies, I thought we could handle it on our own as a family. I read a few articles online, I bought a couple of books, I found an allergist. I thought I had it all together. I was wrong. I didn't know that one of the world's foremost experts in food allergy practice just an hour away was And was taking new patients. I didn't know that the local clinical practice we had chosen was using outdated testing practices. I didn't know that we had to change how we shopped, stored, and cooked food both at home and when traveling.
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Chapters
7 chapters
1
What is the patient‑led health revolution and why does it matter?
0:00–9:32
2
How did Susannah Fox’s career lead her to champion patient innovation?
9:32–17:18
3
What are the most compelling patient‑invented hardware stories (DIY pancreas, Parkinson’s pill dispenser)?
17:18–26:53
4
How did the diabetes DIY community unlock open‑source artificial‑pancreas solutions?
26:53–35:08
5
Why do patients create their own data registries and community‑driven trials (multiple myeloma, rare‑disease registries)?
35:08–44:22
6
How should we handle misinformation and disinformation in online health communities?
44:22–53:54
7
Why are medical research paywalls a barrier and how can open‑access change the landscape?
53:54–57:09