City Lights and The MIT Press celebrate the publication of
Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care
by Susannah Fox
Published by The MIT Press
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.
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.
Advance Praise for the work of Susannah Fox
“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
“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
This event is made possible by support from the City Lights Foundation.