e-Dave deBronkart: Rebel Health - An absolute must-read for the future of healthcare

Rebel Health is clear, well-reasoned, and documented with dozens of case histories, several of which I know first-hand to be true. It’s an absolute must-read if you want to understand patient reality in an evolving cultural and technological space.

“We are lab rats tapping out messages on the bars of our cages.” - an e-patient, 2002

I first heard those words from Susannah Fox in 2008. It was a report she’d found from a proto-early networked patient describing what it was like to connect with others in the earliest days of online life. She was director of the Pew Internet Health Project, and I - like the patients she writes about in Rebel Health - had benefited tremendously from wisdom I’d found in a patient community. I had just survived a near-fatal cancer months earlier, then met her at a retreat. Every word she spoke there was gold, and this book reveals the synthesis she can now add, to put in context, after fifteen more years.

It’s essential that I start by making clear: I know this book is accurate and useful because I was saved by the reality it describes.

I am an “e-patient” - an empowered, engaged online patient, a term coined in the 1990s by “Doc Tom” Ferguson MD (1943-2006). Fox knew and worked with him; I didn’t: he died just before my cancer case. I’ve studied his work; Fox’s paralleled it and survives it.

This review is also rooted in my subsequent experience as a voice of patient empowerment, giving hundreds of speeches in dozens of countries, and hearing what doctors, patients, and others have said back. It’s been diverse feedback, from “Best talk about medicine ever” to “This is crap!” The experience fortifies my saying: Rebel Health is accurate and will be powerful in policy debates.

An anthropologist by education, Fox has studied this phenomenon back to its deep roots. Importantly, she doesn’t advance a “what we should do” agenda - at Pew she described herself as an “internet geologist” who simply reported on “the rocks” she found (the facts), without having an opinion. 68% of people over 65 have a smartphone? Check: duly reported. Leading doctors have reported that nobody can possibly know everything, so it’s legitimate for patients to help? Check: duly reported - without opinion.

But for those who want change, a big next step has been missing: what does it all mean, and what can we do about it? Observers who strive to improve healthcare have needed a formal mental model from which to express what’s so and from which to build a roadmap to improvement. The book’s “Rebel Health Matrix” is that.

It’s a familiar “2x2” layout, on which you can plot whether a patient population has been recognized yet (“visible”) on the y axis, and whether its needs have been met (the x axis). The attached photo is one example of the many in the book.

This can be incredibly useful in understanding the impact of a change, for instance how the internet allowed diabetes patients to connect, form communities, and get “seen.”

A good model makes people look at current reality and say, “It doesn’t have to be that way. We can do better.” Indeed the book walks through numerous examples of moving from quadrant to quadrant as change is introduced.

I hope we’ll see some real debates around where to put different disease communities, because in my speaking engagements I’ve found there can be real tension between what the industry thinks about a disease and what patients think: “We understand your needs” / “Oh no you do not!”; “We’ve met your needs - we have products for you” vs “But we don’t LIKE your products.”

How will industry respond? How will the NIH respond, if patients rebelliously yell “You’re not funding what’s important to us!” The HIV/AIDS activist group ACT UP famously demanded that research funding should focus on finding cures, not just studying their lethal disease while they died from it. Will other communities see where they sit on the Matrix and decide to act?

Will innovative startups and scientists actively look for diseases where the establishment says it’s solved but patients say it’s not?

Note: as Susannah knows, my views are significantly more impatient than hers. I suppose that’s because, as a “geologist,” she doesn’t advocate for anything, much less get angry about lack of change, the way sick people sometimes do! Her style has always been inspiring and positive, while I get sick and tired of how medicine STILL often resists patient-empowering changes that all the evidence says should happen. (Just this week on Twitter a doctor vehemently refused to write her medical notes in a way her patients might understand: “I write them for other doctors!”, which is a now-debunked archaic practice.)

Similarly, in the Rebel Health cover art, the “waving hi” hands in the “rebel” crowd (waaay down at the bottom, no less) bear little resemblance to the protesting patient activists I know (nor any protesting “rebel” I remember from the Vietnam War days). I know rebellious patients who feel rooked: doctors are supposed to be SMART enough to know that times have changed.

These patients don’t wave hi - they demand modernization. Famed activist “Mighty Casey” Quinlan wore a painted blazer featuring one erect finger, aimed at hospitals who resent giving patients their medical records, quoting The Big Lebowski: “This aggression will not stand, man.” The jacket was painted by activist widow Regina Holliday, whose husband’s death was made more painful by that same issue: lack of his medical records. We in THAT rebel community do not think resisting change is occasion to be polite.

But the old guard’s attitude is the past: my own hospital and doctors have for decades been pioneers of the new way, and this book will find strong audience among many young and forward-thinking doctors, not to mention the vast population of other workers in this gigantic industry who can see a better way of doing care - a way that’s focused on THE PEOPLE WHO HAVE THE PROBLEM for which the industry exists - the patients.

I also suffer a little from a baked-in limitation of the archetypes she describes: Networkers (the “lab rats” tapping on cages to find each other), Seekers, Solvers, Champions, each playing a different role in the evolution of a disease community. The roles are absolutely valid, but they exist only within a community, and I know first-hand that we also need system change, cultural change.

But that’s a matter of the book’s scope, not its accuracy. (My advocacy has been universal, and the book is about individual diseases.) Perhaps someday we’ll see a Rebel Health matrix at a societal level, asking: Are our needs visible to the people running the show? And does anyone in charge realize that despite all the spending in US healthcare, we do NOT think our needs have been met?

That too is a sign of how a good model can be a strong contribution to the field. That’s why I say Rebel Health is clear, well-reasoned, and an absolute must-read. (Source: Amazon Review)