Episode 14: Susannah Fox - Rebel Health and Patient-Led Innovations
The transformative power of peer support, patient-centred innovation, and grassroots movements that reshape the healthcare landscape.
Here is Episode 14 of the North of Patient Podcast:
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This week's guest is Susannah Fox, author of Rebel Health. Susannah brings a wealth of experience from her time as Chief Technology Officer for the U. S. Department of Health and Human Services, where she led innovative projects in open data and technology.
Susannah's also served as an entrepreneur in residence at the Robert Wood Johnson Foundation and directed the health portfolio at the Pew Research Center's Internet Project. Her career is a remarkable example of how anthropology, technology, and a drive for democratizing health data can converge to create lasting impact.
In this episode, Susannah shares stories from her career, illustrating how patient-led innovations often emerge from the margins. Join us as we explore the ways in which empowered patients are bridging the gaps in the traditional healthcare system themselves. The conversation also touches on her book, Rebel Health, which offers practical examples and insights for healthcare providers, policymakers, and anyone interested in how grassroots movements drive systemic change.
In this episode, we discussed the research priorities of Parkinson’s patients. If you're interested in exploring the study further, check it out here:
Deane KHO, Flaherty H, Daley DJ, et al Priority setting partnership to identify the top 10 research priorities for the management of Parkinson's disease BMJ Open 2014;4:e006434. doi: 10.1136/bmjopen-2014-006434
Key stamps from our conversation are below:
00:27 Meet the Guest: Susannah Fox
02:04 Susannah’s Career Journey
04:13 Navigating Career Crossroads & Spotting the Future Through Tech Shifts
06:56 Rebel Health: Insights from the Book
12:06 The Movement to Democratize Health Data
15:21 Overcoming the Challenges of Healthcare Innovation
18:39 Middle Management’s Role in Sparking Innovation
21:40 Major Milestones: Susannah’s Achievements as CTO
25:25 Ensuring Continuity in Healthcare
31:25 Empowering Patients Through Data Control
34:42 Battling Misinformation in the Health Space
44:55 The Future of Healthcare with AI Integration
55:31 Closing Remarks: Final Thoughts and Key Recommendations
Key Quotes
“ I wrote this book to say to people who currently hold power: You need to pay attention to the rebels … If you want to see the future, hang out with people living with rare and life changing diagnoses.
And to say to, frankly, regular people … anyone who feels that their questions aren't being answered, anyone who is undiagnosed or struggling to get attention for their problem in health care: You have the opportunity to become a seeker, a networker, a solver, or a champion. These are the four types of people that you'll meet in the patient led revolution.”
- Susannah Fox
“ The best information was literally locked up and kept out of reach from patients. It was locked up in medical journals, in medical libraries, people weren't allowed access to their own medical records. People weren't allowed access to the data that was being generated by their own bodies and tracked and recorded by medical devices. I became obsessed with watching how people were choosing to democratize data and information. A lot of the movement that I saw happened because patients and survivors and caregivers were demanding that access. ” - Susannah Fox