Today’s guest is Susannah Fox, author of Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care. The book is a deep dive into the expert network of patients, survivors and caregivers who are charting a new path of innovation and research. It is for anyone who feels alone, forgotten or lost in the shadows of suffering as they navigate a new diagnosis. But, it’s also for anyone working inside healthcare who is fed up with the status quo.

We discuss:

• How patients – like those first affected by long COVID - accelerate solutions by making invisible problems visible
• That data liberation is often the foundation for patient rebel movements
• The pop up peer groups forming in Amazon reviews
• A framework for understanding, and embracing patient expertise: seekers, networkers, solvers and champions

Susannah reminds all innovators to talk with people living with rare and life-changing diagnoses:

“If you are going to try to understand the intersection of healthcare and technology, you need to put down your clipboard – which is the classic status symbol of a survey researcher – and get out there and just talk to people. Talk to people especially who are dealing with rare and life-changing diagnoses, because those are the people who are going to use technology in ways that we can't even imagine.”

Relevant Links

Susannah’s book Rebel Health

Susannah’s blog: Wow! How? Health

Patient-Led Research Scorecards

An article about how patient-led research could speed up medical innovation

A story about Tidepool Loop receiving FDA clearance

OpenAPS and #WeAreNotWaiting

Hugo Campos’s TedX talk about not being able to access his cardiac device data

Graphic used by Sarah Riggare to show the time spent in self-care for Parkinson’s disease

About Our Guest

Susannah Fox is a health and technology strategist. Her book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, was recently published by MIT Press. She is a former Chief Technology Officer for the U.S. Department of Health and Human Services during the Obama Administration, where she led an open data and innovation lab. Prior to federal service, she was the entrepreneur-in-residence at the Robert Wood Johnson Foundation. For 14 years she directed the health portfolio at the Pew Research Center’s Internet Project where she helped define a new market at the intersection of health, social media, and patient engagement. Fox currently serves on the board of directors of Cambia Health Solutions of Portland, OR, and Hive Networks of Cincinnati, OH. She is an advisor to Alladapt Immunotherapeutics, Archangels, Article 27, Atlas of Caregiving, Before Brands, Citizen, Equip Health, Faster Cures, and the Lemelson Center for the Study of Invention and Innovation at Smithsonian Institution. Fox is a...