July 16, 2024
A scholar of the patient ‘revolution’ tracks
A scholar of the patient ‘revolution’ tracks

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Cover art to “Rebel Health”


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Credit: The MIT Press, 2024.

“In the age of rapid health advancements, Fox reminds us that no amount of tech can replace the support of others who have gone or are going through similar struggles—the relieving elixir of what she calls ‘just-in-time someone-like-me.’”
Esther Perel, psychotherapist; author of Mating in Captivity; host of Where Should We Begin

For Immediate Release

[Cambridge, MA, 2/16/2024] — Anyone who has fallen off the conveyer belt of mainstream health care and into the shadowy corners of illness knows what a dark place it is to land. Where is the infrastructure, the information, the guidance? What should you do next? In Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care (on sale 2/13/2024 from The MIT Press), Susannah Fox draws on twenty years of tracking the expert networks of patients, survivors, and caregivers who have come of age between the cracks of the health care system to offer a way forward.

Covering everything from diabetes to ALS to Moebius Syndrome to chronic disease management, Fox taps into the wisdom of these individuals, learns their ways, and fuels the rebel alliance that is building up our collective capacity for better health. Rebel Health shows how the next wave of health innovation will come from the front lines of this patient-led revolution. Fox identifies and describes four archetypes of this revolution: seekers, networkers, solvers, and champions. Each chapter includes tips, such as picking a proxy to help you navigate the relevant online communities, or learning how to pitch new ideas to investors and partners or new treatments to the FDA. On a personal level, anyone who wants to navigate the health care maze faster will want to become a health rebel or recruit some to their team. On a systemic level, it is a competitive advantage for businesses, governments, and organizations to understand and leverage the power of connection among patients, survivors, and caregivers.

Two groups of people will benefit from reading Rebel Health:

  1. Anyone who feels alone, forgotten, or lost in the shadows of suffering, whether they are navigating a new diagnosis or life with a chronic condition. Patients, survivors, and caregivers will learn new skills and how to deploy them for themselves and their loved ones.
  2. Anyone working inside health care who is fed up with the status quo. If they are ready to create positive change – improve health outcomes, keep people safe, find effective treatments, or bring better products and services to the market – they need new allies and strategies. Rebels are standing by to help.

Health care needs to invite the rebels inside, to connect them with the resources they need to test and scale their ideas. Rebel Health is a how-to guide. Proactive, optimistic, and innovative, Rebel Health is a guiding light for anyone who wishes to join the health rebel alliance and become the hero of their own story.

Author Q&A:

  1. What were the origins of writing Rebel Health? Could you discuss how you decided on the final format of this book?’

Early in my career researching the intersection of health and technology, a mentor told me to spend time in communities of people living with rare diseases and other life-changing diagnoses because they live on the frontiers of medicine. I discovered that these patients, survivors, and caregivers are the rebels of health care. They push boundaries, build new tools, and creatively get access to what they need to take care of themselves and their loved ones. Follow them and you will see the future, faster. It became clear that many more people could benefit from their example so I wrote this field guide as a way for people to gain the skills needed to be the hero of their own health story and for leaders to spot opportunities for investment.

2. You identify four different archetypes in Rebel Health: Seekers, Networkers, Solvers, and Champions. Could you explain the process of how you identified these archetypes?

People whose needs are not being met by mainstream health care react to adversity in a variety of ways. A glimmer of hope, like connection with a peer, can draw a patient out of despair and they set to work on a solution, together. Or a spark of intense frustration jolts a caregiver into action. I was curious about what happens next. What actions do they take?

Once I started looking for patterns, I was able to create categories of activities and motivations. I discerned three archetypes from the start: Seekers, who go on the hunt for answers; Networkers, who pool resources and learn in community; and Solvers, who attack problems and build tools. Champions, who fast-track innovations, emerged as an archetype as I got further into writing the book and recognized the importance of patient-led teams getting access to resources like funding, media attention, regulatory guidance, and materials.

3. One of the core tenets for the patient-led revolution is connection, especially through the internet. You also highlight the importance of being pro-social, not anti-science. How do you recommend patients navigate misinformation in self-care online forums?

Misinformation is a threat to our health as individuals and as a society. We need everyone to help stop its spread. People who are gathering, creating, and sharing health information peer-to-peer, both online and offline, should fact-check and cite their sources. That’s especially hard in a fast-moving situation like a global pandemic or a scary diagnosis but we have to try. Clinicians, researchers, policymakers, and journalists can help by making it easy to find and share facts. The patient-led revolution thrives when people have open access to medical journals and other industrial-strength information.

4. Towards the end of Rebel Health, you identify the need for health care leaders to open doors to patient advocates. If you could relay one message to executives, what would it be?

Seekers, Networkers, and Solvers stand ready to help you achieve your goals. Begin by listening to the needs they identify and find ways to align your mission with theirs. It is a competitive advantage to partner with patients, survivors, and caregivers.

5.  Rebel Health highlights the importance of caregivers in the patient-led revolution. How can health care providers ally themselves with caregivers in the patient-led revolution?

Health care leaders should identify and support caregivers in both their customer and their employee populations. In the care economy, if these essential, unpaid workers wobble, we all fall. Caregivers are also inventive. Companies and investors looking for new product and service ideas should partner with and learn from caregivers, who are innovating every day to make life better for their loved ones.

6. One of the most fascinating aspects of your book is the anecdotes with real-life Seekers, Networkers, Solvers, and Champions. What were some key familiar themes that you saw across your interviews and case studies?

Finding a “just-in-time someone-like-you” to console and advise you is a priceless treasure. This is true whether you are dealing with a common, even welcome, situation like a healthy pregnancy, or a life-limiting diagnosis like cystic fibrosis or ALS. Across every community and condition, people find it useful to learn from peers on the same path.

Courage is another recurring theme. It takes bravery to raise your hand and say, “I need help” or “I have an idea.” But it is the first step to getting access to what you need to solve a problem.  Everyone, whether they are a Seeker, Networker, Solver, or Champion, has to fight through doubt and take that first step.

7. This book is a field guide, and each chapter highlights tips for the four archetypes. It’s dynamic and made to be used. What is your hope for readers walking away from your book and into health care facilities?

I want everyone to step into their power as change agents. If your questions are not being answered, learn the ways of Seekers and go on the hunt. If you see a device or system that does not work the way it should, think like a Solver and start looking for ways to fix it. If you feel alone, find the Networkers. If you are in a position of influence and spot a patient-led team doing great work, be a Champion and help them scale. Everyone has the opportunity to join the revolution for better medical care.

Endorsements:
“Susannah Fox makes visible the experience and wisdom of remarkable patients who are creating solutions and setting new standards for what is possible in health care, providing inspiration for all seeking better health.”
Harlan M. Krumholz, Harold H. Hines Jr. Professor of Medicine, Yale School of Medicine
 
“Through Susannah Fox’s unique framework of four patient archetypes, she shines a light on the ingenuity that arises when people collectively leverage their lived experiences to change the status quo, giving us hope for the continuation of a patient-led revolution.”
Gina Assaf and Lisa McCorkell, cofounders of Patient-Led Research Collaborative
 
“Susannah Fox teaches us how the best path to improving care is to rebel! Rebel Health is a crucial look at how patient communities can make the difference when the medical field ignores their concerns.”
Andy Slavitt, General Partner, Town Hall Ventures; author of Preventable

Rebel Health is a wonderful testament and practical guide to the way people can come together and tap into their collective resilience to address health challenges. Susannah Fox writes with great wisdom and depth about how the different actors (Seekers, Networkers, Solvers, and Champions) work together to promote innovative patient-led solutions to previously unrecognized health needs.”
Jack Saul, author of Collective Trauma, Collective Healing: Promoting Community Resilience in the Aftermath of Disaster

“Navigating the health care system can feel overwhelming for anyone recently diagnosed with a disease and for health care professionals trying to give excellent care to their patients. A revolution is brewing, and no one is more qualified than Susannah Fox to lead it. Rebel Health is an inspiring and empowering field guide for transforming American medicine into true health care. Highly recommended!”  
Dean Ornish, New York Times bestselling author of UnDo It!; Founder and President, Preventive Medicine Research Institute; Clinical Professor of Medicine, University of California, San Francisco

About the author:

Susannah Fox helps people navigate health and technology. She served as Chief Technology Officer for the US Department of Health and Human Services, where she led an open data and innovation lab. Prior to that, she was the entrepreneur-in-residence at the Robert Wood Johnson Foundation and directed the health portfolio at the Pew Research Center’s Internet Project. https://susannahfox.co


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