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Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care
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 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.
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 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.
200 pages, Hardcover
Published February 13, 2024
21 people are currently reading
1795 people want to read
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Displaying 1 - 17 of 17 reviews
July 16, 2025
I received a free copy through a giveaway!
This was such a well-organized, well-researched book. It provides the framework of patient-led innovation for anyone looking to get started. Whether they simply have a need that’s not being met or they are someone with connections to provide resources necessary to have that need met, the book discusses roles everyone can play in the process.
This was such a well-organized, well-researched book. It provides the framework of patient-led innovation for anyone looking to get started. Whether they simply have a need that’s not being met or they are someone with connections to provide resources necessary to have that need met, the book discusses roles everyone can play in the process.
physical_to-read_stack
March 5, 2024I received my copy free through Goodreads Giveaways.
April 16, 2024
Such an excellent and much needed read for all who receive & provide healthcare. An inspiring read with clear action steps for the reader to also be a rebel!
May 16, 2024
Susannah Fox is one of those people whose drive to do something so meaningful and so consequential, always has her on your radar. You want to know what she’s up to as it’s probably field leading, going to make an impact, and inspiring all at the same time. Her book, Rebel Health has all the characteristics of the Susannah that I have seen on stage, out in the field, and in her writing. It’s her challenge for us to do more, be better, and never forget the voice of the people we are trying to help.
In Rebel Health, Susannah has done something brilliant. She has taken the concept of a field guide, and written an entire book around “rebels” for health. These people, often identified as patients, who take their role as innovative, and often disruptive leaders very, very seriously. What I absolutely love about this book, which keeps you engaged from the moment you open it, is that it’s addressing some pretty heavy and complex topics all while giving you real life stories from patients. And these stories? My friends, they will absolutely inspire you.
I don’t want to ruin too much of this book, but do have to say that Susannah’s archetypes for these leaders is brilliant and will have immediate application in your work - whatever your field. In addition, her figures, which are present throughout the book, are, not surprising, worthy of immediate use on your favorite slide deck. Multiple times I found myself saying, “Ah, I get it now,” and, “I can’t wait to use this one!"
This is a must read!
In Rebel Health, Susannah has done something brilliant. She has taken the concept of a field guide, and written an entire book around “rebels” for health. These people, often identified as patients, who take their role as innovative, and often disruptive leaders very, very seriously. What I absolutely love about this book, which keeps you engaged from the moment you open it, is that it’s addressing some pretty heavy and complex topics all while giving you real life stories from patients. And these stories? My friends, they will absolutely inspire you.
I don’t want to ruin too much of this book, but do have to say that Susannah’s archetypes for these leaders is brilliant and will have immediate application in your work - whatever your field. In addition, her figures, which are present throughout the book, are, not surprising, worthy of immediate use on your favorite slide deck. Multiple times I found myself saying, “Ah, I get it now,” and, “I can’t wait to use this one!"
This is a must read!
February 12, 2024
Susannah Fox has written the definitive "field guide" for people facing serious medical issues, and an introduction for anyone in the medical system to learn how to tap into the "rebel health alliance."
Our natural instinct when we or a loved one is sick is to find out everything that others like us have experienced -- the "just-in-time someone like you" as the author puts it: "But most people don’t know how to begin to look for fellow patients and caregivers who can advise them. There is no systematic way to find help."
Filled with examples from rare disease activists, Type 1 Diabetics, and others, this book tells you how to find others like you, benefit from insights of those who have come before, and organize new networks of patients and caregivers.
But it is also for people who work in health care. The networks that rebel patients create are sources of wisdom and insight for those who want to improve outcomes and the way the system works. As Ms. Fox concludes, "Mainstream health care needs to invite the rebels inside. We need to connect these out-of-the-box thinkers with the resources they need to test and scale their ideas. This book lights the way forward."
Today, it is patient-led activism that is transforming our understanding and treatment of Long COVID, ALS, and many other conditions. The Rebel Health Alliance starts now!
Our natural instinct when we or a loved one is sick is to find out everything that others like us have experienced -- the "just-in-time someone like you" as the author puts it: "But most people don’t know how to begin to look for fellow patients and caregivers who can advise them. There is no systematic way to find help."
Filled with examples from rare disease activists, Type 1 Diabetics, and others, this book tells you how to find others like you, benefit from insights of those who have come before, and organize new networks of patients and caregivers.
But it is also for people who work in health care. The networks that rebel patients create are sources of wisdom and insight for those who want to improve outcomes and the way the system works. As Ms. Fox concludes, "Mainstream health care needs to invite the rebels inside. We need to connect these out-of-the-box thinkers with the resources they need to test and scale their ideas. This book lights the way forward."
Today, it is patient-led activism that is transforming our understanding and treatment of Long COVID, ALS, and many other conditions. The Rebel Health Alliance starts now!
February 24, 2024
Note: This review is written by Susannah M. Fox for her friend, Susannah R. Fox, we just happen to share the same name and commitment to health care!
Health care is ripe for transformation" Susannah Fox
writes in her new book #RebelHealth. This could not be more true.
The stories she weaves around the four archetypes that will be critical to a patient-led revolution are astute and thoughtful and speak to the often under-estimated power of community in peer-to-peer communication.
I appreciate how Susannah titles her book because “rebel” encompasses the mindset that is essential for creating a full-spectrum health care revolution.
From patients to payers, providers to advocates, scientists, philanthropists and everyone in between. This movement requires us all to be active participants.
In writing this comprehensive field guide, Susannah pulls back the curtain of the invisible and inspires me to approach how I meet the needs of my family’s (and my own) healthcare in an entirely new way.
Susannah’s book “Rebel Health” will be on my desk, travel bag and on my mind for some time to come.
https://lnkd.in/e8mNyKjX
#RebelHealth
Health care is ripe for transformation" Susannah Fox
writes in her new book #RebelHealth. This could not be more true.
The stories she weaves around the four archetypes that will be critical to a patient-led revolution are astute and thoughtful and speak to the often under-estimated power of community in peer-to-peer communication.
I appreciate how Susannah titles her book because “rebel” encompasses the mindset that is essential for creating a full-spectrum health care revolution.
From patients to payers, providers to advocates, scientists, philanthropists and everyone in between. This movement requires us all to be active participants.
In writing this comprehensive field guide, Susannah pulls back the curtain of the invisible and inspires me to approach how I meet the needs of my family’s (and my own) healthcare in an entirely new way.
Susannah’s book “Rebel Health” will be on my desk, travel bag and on my mind for some time to come.
https://lnkd.in/e8mNyKjX
#RebelHealth
February 15, 2024
Rebel Health by Susannah Fox is a field guide for the patient/citizen-led revolution in healthcare. With a historical perspective and many recent examples Susannah describes how unmet needs of patients (Seekers) find solutions by identifying people with similar needs and thus become Networkers to form communities that attract Solvers and Champions for funding and wide-spread adoption. While Eric Topol, MD in The Patient Will See You Now described prominent examples of the patient-led revolution in 2015 #rebelhealth has many more cases and provides hands on advice and tools on how to identify unmet and invisibles needs, form communities and networks that lead to wide-spread adoption. I have been following Susannah Fox on Twitter for almost 10 years and I share many of her eloquently presented ideas in the book.
September 2, 2025
Susannah Fox has written a book that feels like an open invitation to rethink where innovation really begins. Spoiler: it’s not inside big institutions — it’s in living rooms, online forums, community groups, and at the edges where people refuse to wait for permission to solve problems. I should know. I'm one of these people and this book explained myself to me. Truly transformative.
These stories are real and deeply human: patients, caregivers, and everyday innovators creating better solutions for themselves and their communities. Ms. Fox doesn’t just report on this world — she amplifies it with empathy and clarity.
If you’re curious about the future of health — or simply how ordinary people quietly invent extraordinary change — this is a hopeful, energizing read that stays with you long after you finish.
These stories are real and deeply human: patients, caregivers, and everyday innovators creating better solutions for themselves and their communities. Ms. Fox doesn’t just report on this world — she amplifies it with empathy and clarity.
If you’re curious about the future of health — or simply how ordinary people quietly invent extraordinary change — this is a hopeful, energizing read that stays with you long after you finish.
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November 22, 2023I was fortunate to receive an early copy of Fox's 'Rebel Health' -- all opinions are my own.
Suzannah beautifully captures her life's work -- and the work still to be done -- on the healthcare system as we know it. As a former healthcare tech founder and lifelong patient entrepreneur, I know many of the highlighted individuals in her book - and wish I had this 'guide' when I first started my company.
I think there is a lot to glean from her fact-filled storytelling -- for patients, caregivers, individuals working within healthcare and government, and those just willing to open their minds and ears to the plight of the patient population globally.
Thank you, Susannah, for your work over the decades and for putting it out for the world to read.
Suzannah beautifully captures her life's work -- and the work still to be done -- on the healthcare system as we know it. As a former healthcare tech founder and lifelong patient entrepreneur, I know many of the highlighted individuals in her book - and wish I had this 'guide' when I first started my company.
I think there is a lot to glean from her fact-filled storytelling -- for patients, caregivers, individuals working within healthcare and government, and those just willing to open their minds and ears to the plight of the patient population globally.
Thank you, Susannah, for your work over the decades and for putting it out for the world to read.
February 12, 2024
I can’t recommend Rebel Health by Susannah Fox enough. The enemy is disease - thanks for that golden rule. Susannah’s archetypes, Seeker, Solver, Networker, and Champion, meld well with one of my frames for health and advocacy, the three Ts and 2 Cs (Trust, Time, Talk, Control, and Connection). As a person who sees life as grey, not black and white, the one absolute I’ve found is that almost all leaders in healthcare perceive that they lead chaos. The archetypes and the 3Ts and 2Cs may help leaders control the chaos slightly. Some order may be all we can ask for
April 29, 2024
A must read for. anyone in healthcare or experiencing a health crisis
Susannah Fox outlines with great depth and talent the ongoing patient led health and innovation revolution. Filled with inspiring stories, practical tips and scientific references the book outlines a framework for leading patient innovation or any other innovation in healthcare.
Susannah Fox outlines with great depth and talent the ongoing patient led health and innovation revolution. Filled with inspiring stories, practical tips and scientific references the book outlines a framework for leading patient innovation or any other innovation in healthcare.
October 12, 2025
Rebel Health has completely reshaped how we think about healthcare innovation. Ms. Fox's message that the people closest to the problem often have the most meaningful solutions clearly shows the power of patients and caregivers as changers. Highly recommended for anyone interested in public health, patient advocacy, or believing that change can start from the ground up.
February 20, 2024
Susannah Fox does a fantastic job of describing the journey that those of us in the rare disorder/disease community face in connecting with others and how to build a community. A must read for all affected by rare disorders. Vicki McCarrell, CoFounder, Moebius Syndrome Foundation
April 15, 2024
This is a great and helpful guide to navigating the broken and dysfunctional healthcare space with examples of how people are getting things done despite of that overwhelming brokenness. Short, useful and to the point! Exactly what I wish every nonfiction book to be.
June 9, 2024
Eye-opening, must-read for anyone who is part of or will ever interact with the healthcare system (i.e. anyone). Not a business consultant, so I didn't care much for the quadrants and role labels, but great storytelling!
February 20, 2024
Loved reading about the advocacy efforts of so many patients in the patient-led health community.
February 16, 2024
Susannah shares both a gold mine of patient-led healthcare innovation plus giving her readers an aerial view of the types and patterns of development of new ideas. She also lists several specific platforms that serve as communication channels and private databases for people with rare diseases, as well as new approaches to all too familiar health challenges.
Displaying 1 - 17 of 17 reviews