Susannah Fox has written a new book called Rebel Health: A Field Guide to the Patient-Led Revolution in Medical Care. Her book overlaps with my own book about reimagining health care called Ducks in a Row, so I offer this essay as a commentary, not a review.
Rebel Health is a book written for anyone in health care who is fed up with the status quo. It has shades of the classic book about social change called Getting to Maybe: How the World is Changed, as both books offer up case studies as inspiration for action. If you pine for positive health care change like I do, reading both Rebel Health and Getting to Maybe will help keep a fire lit in your belly.
Rebel Health’s call for a revolution is rooted in accounts about patient-led innovations in health care. Patients, families and caregivers have been forced to be their own McGyvers, as they build bridges and fill the gaps to mend the many inequities in the health care system.
The book is well-referenced, confident, and for those who like visuals and models, offers up a Rebel Health Matrix scattered throughout the chapters.
Rebel Health opens with stories about people like a diabetes patient who created a working alarm for blood glucose monitors that was loud enough to wake patients up. Fox outlines the history of peer-led support movements, like AA, La Leche League and the groups who worked to de-institutionalize disabled people.
Grassroots leaders made progress in areas abandoned by the mainstream health-care system.
Rebel Health references clever work arounds invented by patients who had a need that was dismissed by the system, like Parkinson’s patients who asked for a better way to dispense tiny pills into shaky hands, Fox shares stories about how families push for change in systems and succeed, illustrated by the example of how one mom’s advocacy after the tragic death of her toddler led to hospitals creating family-activated rapid response systems.
The book is clearly split into sections about four different styles of revolutionaries: Seekers (who ask questions and gather information), Networkers (who believe in forming spaces for connections), Solvers (who build their own solutions) and Champions (who have access to resources to fast-track innovation). Fox offers real-life examples about each type of rebel. These rebels are ordinary people who have who have leaned on their own talents to make the health care world a better place.
Seekers are curious and can find information in unexpected places, like in Amazon reviews of health products. In recent years, Seekers have relied on the Internet. The Internet, starting with chat rooms, moving to blogs and social media, and now with podcasts and videos, has opened up an accessible and 24/7 area for support. Sadly, the past few years of misinformation, data mining and hostility have no longer made virtual environments a safe space for patients to organize. (I predict a trend towards old-fashioned one-on-one connections and in-person groups in the future).
Networkers build infrastructure for patients and families to connect together. A personal story: With two other moms, I co-founded a peer support program in 2004 with for families who had a new baby with Down syndrome. We began the Visiting Parents Program out of a deep isolation, for nobody had visited or congratulated us on our sweet babies after they were born. Our program became successful and still exists today because of the partnership between the families who run the program and the health professionals (champions like genetic counsellors, pediatricians, social workers and nurses) who refer families to peer support. I can personally testify to the power of Networkers, and encourage professionals to connect patients/families together whenever they can.
Patients who are Solvers have built their own solutions like pill bottles that dispense one pill at a time, homemade air purifiers during COVID, symptom trackers and adaptations of home health equipment. Fox emphasizes that patients need tools to create these innovations, starting with access to their own data.
The last category of rebels in Rebel Health are Champions. These can be patients who are engaged with health care at the system level, or those who work inside the system and who are willing collaborators. Fox offers helpful advice to Champions, like aligning with outside innovators, creating guidelines for ethical engagement, and the importance of ambassadors to bridge between patients and organizations. (I have held two ambassador positions in my career in engagement for children’s hospitals. In my opinion, this bridge is essential to get work done to create sustainable and meaningful change. If the ambassadors are peers? Even better).
It was up to them to save their people.
This quote sums up Rebel Health. As a patient advocate, reading this book reminded me that nobody is more invested in health care than patients. Nobody else is coming to save us. We have to save ourselves. I guarantee that Rebel Health will give you renewed respect for the work that grassroots patients have done to move the needle in health care. I'm grateful to Susannah Fox for writing this informative, validating and motivating book.
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