Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care

by Susannah Fox

Overview

An action-oriented and radically hopeful field guide to the underground, patient-led revolution for better health and health care.

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, 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.

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.

Product Details

ISBN-13:	9780262378079
Publisher:	MIT Press
Publication date:	02/13/2024
Sold by:	Penguin Random House Publisher Services
Format:	eBook
Pages:	160
Sales rank:	526,068
File size:	3 MB

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.

Table of Contents

CONTENTS: 
Preface ix

1 SEEKER, NETWORKER, SOLVER, CHAMPION 1
2 SEEKERS 17
3 TACTICS AND COURAGE 31
4 NETWORKERS 45
5 VISIBILITY AND COMMUNITY 65
6 SOLVERS: TREATMENT INNOVATION 77
7 SOLVERS: DATA ACCESS 91
8 TOOLS AND RESOURCES 103
9 CHAMPIONS 117
10 MISSION ALIGNMENT 133
11 GET STARTED 151

Acknowledgments 163
Notes 167
Index 177

What People are Saying About This

From the Publisher

“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
 
“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

Editorial Reviews

"Researcher Susannah Fox believes that no one with a new diagnosis should ever have to feel alone. When patients connect with peer support, they step into a community where they may ultimately find a starring role in pioneering solutions. Fox spent two decades learning from radical patient-led communities that leveraged the power of the internet to make strides against life-altering health issues, including cancer, diabetes, and most recently long Covid. She took that idea to the Obama administration, where she served as chief technology officer at the Department of Health and Human Services. In her new book Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, she argues that every government agency and business that touches on health care should have an intake valve for insights generated by patients, survivors and caregivers. Everyone can benefit from this underground revolution."
—Psychology Today

“Rebel Health taps into the knowledge that Fox has accumulated over decades of studying online patient communities. Her resumé reads as an eclectic combination of high-end roles, from former Chief Technology Officer for the Department of Health and Human Services under the Obama Administration, to an entrepreneur-in-residence at the Robert Wood Johnson Foundation, and directing the health portfolio at the Pew Research Center’s Internet Project. But the throughline has always been the people leveraging technology to get some answers."
—STAT News

"Susannah Fox, former chief technology officer at the U.S. Department of Health and Human Services, has emerged as one of the nation’s most prominent advocates for patient-centered health care. Her new book, Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care, is built on a decades-long career at the intersection of technology and health. Her central thesis is this: Leaders in health care must invest in patient-led research and advocacy. Patient perspectives, Fox argues, are critical to the health field’s ability to innovate.Fox’s book is concise—it could be read on a cross-country flight—but offers a comprehensive guide to creating, supporting, and learning from patient communities that have sprung up online and in-person (think long COVID groups). Rebel Health seeks to empower patient leaders and calls on health care workers to join the growing movement supporting patient-led health care."
—Harvard Public Health Magazine

From the Publisher