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Full 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
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
