Rebel Health

Description

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.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″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
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.US

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