It’s been a fantastic six weeks since the release of my book, Rebel Health, and I thought I’d take a moment to gather up the press clips and podcasts that have appeared so far.
Articles:
- The patient-led care revolution – Q&A with Fiona Lowenstein in Harvard Public Health magazine.
- Favorite bit: Differentiating patient-led from patient-centered. “I have seen the shift to patient-led health care happen most radically when there are no clinicians around, whether because the people suffering are not yet visible to the mainstream health care system, as in the case of an emerging disease or a set of mysterious symptoms, or because the people in need are shut out of care because of discrimination, geography, economics, and other factors.”
- A scholar of the patient “revolution” tracks the arc from powerlessness to influence – Q&A with Isabella Cueto in STAT.
- I appreciated the chance to talk about the through line of my career, including my government service: “The experience of working at HHS gave me a tempered optimism. There are some things that can happen quickly at the individual level, which is why I’m so excited about the possibility of the patient-led revolution being led by people at the kitchen table, and how people can take some of these lessons home and create change immediately. And that’s tempered by the understanding that some of these changes will be at the national level and will require policy changes.”
- How You Can Hack Your Own Healthcare and Upgrade Your Life – Q&A with Ryan Prior in Psychology Today
- Highlighted the HHS Invent Health initiative and the insight that “the closer we get to the person who’s actually experiencing the challenge, the better that innovation or invention will be.”
- Patients are finding each other online. That power is reshaping medicine, by Beth Kutscher on LinkedIn
- Rebel Health: The Personal and Professional Passion of Susannah Fox, by Jane Sarasohn-Kahn on Health Populism
- Rebel Health: Patients Leading the Way, by Rebekah Schroeder for U.S.1
- You Say You Want a (Healthcare) Revolution? by David Ewing Duncan in FUTURES
Podcasts:
- The Visible Voices with Resa E. Lewiss, MD
- A favorite conversation because although I’ve never met Resa in person, we hit it off like sisters from another mister.
- When Money Isn’t Enough – Earn & Invest with Jordan Grumet, MD
- Bang! That’s how this interview starts. We dive right into one of the most surprising stories from the book.
- HITea with Grace Vinton
- Who doesn’t love spilling the tea? I love how Grace weaves together both professional and personal questions, like how I stay healthy while working on knotty health care issues.
- Primary Care Cures with Taylor Coffman and Ron Barshop
- Public health and Rebel Health for community advocacy
- The diabetes community and the health care “rebel alliance” with Stacey Simms
- Has the Social Internet Democratized Patient Empowerment? with Chris Boyer and Reed Smith
- Rebels in Health — the Enemy is Disease with Danny van Leeuwen
- Planetary Health First, Mars Next with Michael Mann
- Partners in Digital Health with Matthew Sakumoto, MD, and Sarah Bell, RN, MSN, MHA
If you have a favorite podcast that you think I should pitch, please drop it in the comments below!
Rebel Health photo image by Clara Ganz
This is just amazing. Go you!
Thank you!!
New article in Science News by Betsy Ladyzhets (& I highly recommend following her work):
How patient-led research could speed up medical innovation: People with understudied chronic conditions are taking up science
The piece centers around the work being done by ME/CFS patients, along with Long Covid patients, to gather data and experiment with possible treatments for post-viral illnesses. Ladyzhets weaves in the historical context for patient-led innovations, including a couple of examples I cite in Rebel Health: the Black Panther Party’s work to collect data on the prevalence of sickle cell anemia in the U.S. in the 1970s and AIDS activists’ work to collect effectiveness data about treatments in the 1980s.
If you’re interested in learning more about those two examples, I recommend:
Body and Soul: The Black Panther Party and the Fight Against Medical Discrimination, by Alondra Nelson
Impure Science: AIDS, Activism, and the Politics of Knowledge, by Steven Epstein
Researching the history of radical health movements in the U.S. and writing the timeline for Chapter 1 of Rebel Health was one of my favorite projects. As I said in the Science News article, “Every decade of the 20th century had an example of people who were either being ignored or who were being discriminated against” by scientists and doctors, and who “banded together to innovate or gather data.”
If you have a recommendation for more additions to the patient-led timeline, please let me know!
I am also happy to share Dee Sparacio’s review of Rebel Health on her blog, Women of Teal. Her closing quote captures one of my goals for the book: “If you are a patient, caregiver or advocate don’t shy away from a challenge rather read this book be inspired and guided to lead your own revolution, solve problems, give hope and make a difference in your life or the lives of others.”
Since this blog is my outboard memory, I’m going to add three new media placements that popped up today:
The Cambridge Forum hosted me, Alexandra Drane, and Allen Sussman to talk about the intersection of technology, patient experience, caregivers, and clinical care: Video
Plutopia, a podcast hosted by Jon Lebkowski, interviewed me about Rebel Health.
How patients are using technology to kick-start a healthcare revolution is a Q&A with me and Kevin Dickinson of Freethink.
And I’ve created a YouTube playlist of all my Rebel Health-related speeches, podcasts, and Zoom appearances.
New episode of The Heart of Healthcare dropped this morning:
Healthcare’s Hidden Growth Engine: Patients
Halle Tecco & I talk about:
– the origin of the title of my book, Rebel Health (thanks, Alexandra Drane!)
– the origin of the term peer-to-peer health care (finding a just-in-time someone-like-you can make all the difference)
– why I wrote this book: to help people step into their power as patients, survivor, caregivers, and health care leaders
– the four archetypes: Seeker, Networker, Solver, Champion (Halle is a Seeker-Champion)
– what startup founders can learn from my book (it’s a competitive advantage to include people with lived experience on your team)
– our shared love of matrices (if it works, use it)
– how a small group of people can make a difference in health care if they bring their power, network & skills
– the importance of sharing failures as well as successes (credit to Brian Wallach and Sandra Abrevaya and their teams at I AM ALS and Synapticure for walking this walk)
– Eric von Hippel’s research into “free innovation”
– Amy Tenderich’s leadership in helping to take down the “patients keep out” sign on diabetes conferences
– Jen Horonjeff and Savvy Coop’s work in paying people with lived experience for their insights on health care products and services
– why it’s not only fair to give everyone access to medical journal articles (since citizens pay for most of it with their tax dollars) but it’s also a strategy to fight misinformation & disinformation
– how PatientsLikeMe helped patients design a drug trial that got results faster than any clinical trial (and what the company is doing now)
Listen wherever you get your podcasts!
New podcasts featuring Rebel Health conversations:
The Other 80
https://www.theother80.com/the-patientled-revolution-with-susannah-fox
And here’s a blog post digging into the conversation that Claudia Williams & I got into:
https://susannahfox.com/2024/04/22/the-other-80/
Artificiality
https://www.artificiality.world/susannah-fox-rebel-health/
Here are two more radio shows featuring me and Rebel Health:
The Mountain Life (Utah)
https://www.kpcw.org/show/the-mountain-life/2024-05-08/field-guide-to-a-patient-led-revolution-for-better-healthcare
The People’s Pharmacy (nationally syndicated NPR show originating in North Carolina)
https://www.peoplespharmacy.com/articles/show-1387-the-patient-led-revolution-in-health-care
Plus these new podcast episodes:
Commonwealth Club of California with DJ Patil
https://www.commonwealthclub.org/events/2024-04-10/susannah-fox-rebel-health
Discovery Diaries with Damon Davis
https://susannahfox.com/2024/05/16/discovery-diaries-with-damon-davis/
The Pursuit of Health podcast with Dr. Eric Fethke
https://thepursuitofhealthpodcast.buzzsprout.com/1528001/15164528-ep46-the-patient-led-revolution-with-susannah-fox
Podcasts have been a continual source of inspiration for me this year as each host takes a different angle on the patient-led revolution and what it means for their sector of health care. Here are two new ones since the last time I posted a round-up:
Brian Urban of Finthrive hosts the Healthcare Rethink podcast. Here’s a link to Episode 97, which features my take on why I am grateful I studied anthropology, which I see as a license to be professionally curious. I also talk about why I dove into the internet back in the 1990s, motivated by its ability to democratize access to information and data, and I get to talk about the amazing Tom Ferguson, MD, who guided my path toward working directly with patients, survivors, and caregivers in mapping the online health landscape.
Joe Kvedar hosted me on the American Telemedicine Association podcast and it is (yes, again) one of my favorite conversations about Rebel Health. We talked about how many people are stunned by a diagnosis or hit with a health challenge. What happens next is what I am interested in and what I write about in my book. Some people go on the hunt for information and don’t give up. Others look for community and pool resources, together. A third type of person reacts to a setback by inventing a new device, process, or service. We can all learn from and partner with these rebels of health care. Listen here: Health. Virtually. Uncensored. (July 8, 2024)
New podcasts, each one bringing out new stories & insights:
Melanie Marcus interviewed me for the Surecripts podcast, There’s a Better Way. Here’s the episode: The Rebel’s Guide to Navigating American Healthcare
https://surescripts.com/podcasts/the-rebels-guide-to-navigating-american-healthcare-with-susannah-fox
Dr. Sharon Bergquist’s The Whole Health Cure was a chance for me to talk about how clinicians and other health care leaders need to acknowledge that many patients crave the insights and advice that a community can provide. Here’s the episode:
https://thewholehealthcure.simplecast.com/episodes/susannah-fox
I was honored to be the first guest on Shannon Lantzy’s new podcast, Inside MedTech Innovation. We tell the story of how we met through a mutual friend and bonded about our shared love of the FDA (yes, really).
Listen on Spotify: https://open.spotify.com/show/0idCTXcel0SvjHLalRoxIl?si=a9fbf7a5df8a4dff&nd=1&dlsi=94edea6e32674dc5
Or Apple podcasts: https://podcasts.apple.com/us/podcast/inside-medtech-innovation/id1761418133
Dr. Andrea Austin interviewed me for her Heartline podcast, which asks people to share a “revitalization moment” in their career (what a great question!). Mine was when I was invited to do fieldwork in communities of people living with rare diseases. It set me on the path to coin the term “peer-to-peer health care” and eventually write Rebel Health. The episode is: “Get in the Game: Tapping into Patient Expertise for Healthcare Innovation with Susannah Fox”
https://healthpodcastnetwork.com/episodes/heartline/get-in-the-game-tapping-into-patient-expertise-for-healthcare-innovation-with-susannah-fox/
Two new video interviews are also up:
Jamie Heywood and I talked about the origin of our contributions to the patient-led revolution
https://youtu.be/CEzBWXWkdh4?si=0BqVJuUkG5RhwJBW
Rock Health invited Jen Horonjeff and I to talk about the power of patient perspectives
https://youtu.be/WP-yRkgXrH8?si=svUodosnyNyXjPU6
Podcasts are popping like popcorn over here!
Sue Rocco hosts “Women to Watch” — a fantastic series of conversations that feature not only discussions about career and professional accomplishments, but also real talk about navigating life.
Here’s the YouTube (and hit that subscribe button to catch Sue’s future interviews):
https://youtu.be/GeC_07uO4OI?si=jmSSSCIELa4wAfgw
Health UnaBASHEd is a podcast co-hosted by Gil Bashe and Gregg Masters. I got to talk about how Tom Ferguson, MD, foresaw the patient-led revolution and encouraged me to spend time on the frontiers of health care with the cowboys, artists, and rebels who are building what they need. Listen here: https://youtu.be/E820I70veIw?si=ajB23nx6JoccTiq3
I spoke with Rita McGrath just a few days after Brian Thompson, the CEO of United Healthcare, was shot and killed in December, so that was a jarring kick-off to our conversation about Rebel Health, but I think important since it gave us a chance to talk about the deep frustration and anger that is bubbling under the surface of the U.S. health care system. Here’s the YouTube link (and you can find it on most podcast apps, too): https://youtu.be/S4iKTjrzd14?si=K9iPrHtmaqH1lAJz
Jonny Currie’s podcast about community, health, and capital is based on his experience in Wales but includes insights applicable to us all. You can listen in on our conversation here: https://comm_health_cap.buzzsprout.com/2270573/episodes/16182800-creating-a-patient-led-revolution-in-healthcare-with-susannah-fox-author-of-rebel-health
Emily Silverman, host of The Nocturnists podcast, suggested I begin the show by reading the most personal section of my book, when I realized I needed help from peer parents of kids with food allergies. I’m going to write more about the conversation that ensued, but for now, give this show a listen: https://thenocturnists.org/podcast/unleashing-patient-innovation-with-susannah-fox
Puneet Seth, MD, hosts the North of Patient podcast, which “aims to paint an inspired landscape of healthcare’s future through dialogues with creative and unconventional thinkers from around the globe.”
Here’s a link to his Substack post about our conversation:
https://northofpatient.substack.com/p/episode-14-susannah-fox-rebel-health
Zeev Neuwirth hosts the Creating a New Healthcare podcast and I’m very happy to share Episode #194:
Patients Taking Positive Action in Healthcare with Susannah Fox, Author, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care
https://www.creatinganewhealthcare.com/2025/02/25/episode-194-patients-taking-positive-action-in-healthcare-with-susannah-fox-author-rebel-health-a-field-guide-to-the-patient-led-revolution-in-medical-care/
Dr. Neuwirth asked me questions that allowed me to highlight the rare disease community’s influence on me, personally, and on my research, so I’m especially pleased that this episode is being released during Rare Disease Week.
I also appreciated the chance to give practical advice to health care leaders and clinicians. Nothing earth-shattering for long-time readers of this blog, but I loved having the chance to say, for example, that no newly-diagnosed patient should go home alone. Everyone should have the knowledge that there are people who would love to help you, if only they knew how to find you.
One point I made that did not age well since we recorded our conversation: I was hopeful that the incoming Trump administration would, as the first Trump administration did, build on the programs of the HHS Office of the CTO. I made the point that Todd Park, Bryan Sivak, and I served as the HHS CTOs in the Obama administration and seamlessly handed it off to Bruce Greenstein and Ed Simcox of the first Trump administration. They expanded the Open Data Initiative and launched KidneyX, just to name two important accomplishments. But this incoming Trump administration, I just found out this morning, fired the incredibly well-qualified Alicia Rouault who had JUST started her job as the new HHS CTO when DOGE came in like the indiscriminate, dangerous wildfire it is.
So much more to say, but I’ll end this comment here.