participatory medicine

Guess who got invited to WHO? No, really. The World Health Organization (WHO) invited yours truly to its First Global Experts’ Consultation in service of building a WHO framework for patient and family engagement. This is all due to my part in the ongoing anvil chorus that is the new Patient & Family Engagement Roadmap, developed by a group of dedicated folks from all parts of the healthcare compass over the last couple years, with funding from the Gordon & Betty Moore Foundation. I spent just over two days in Geneva, most of the time head-down in discussions about how the global health system – a patchwork of services delivered by an even patchwork-ier cadre of healthcare delivery systems – can better serve the needs of the people/patients who seek medical care and health information from them. This post will not attempt to report everything I saw/heard/thought/felt in that jam-packed 16 hours of ideas and outlooks. What I’ll share is my perspective on the challenges, the opportunities, the pitfalls, and the hopes that – in my view, at least – emerged during that lightning round of global spitballing. Challenges There’s an old joke that asks, “What’s an elephant?” The answer: “A mouse designed by a government committee.” That’s the risk, and challenge, to any attempt to build a definable set of standards for a human effort. Education, transportation, trade, infrastructure, communication, medicine – all require some sort of standardization to make them useful to more than one or two people huddled over a campfire. A study of history will show that as much as we humans are great idea generators, trying to get the rest of the tribe to adopt our new idea isn’t easy. The father of quantum mechanics, Max Planck, said it best: “A new scientific truth does not…

Paul Levy, the former CEO of Beth Israel Deaconess Medical Center in Boston, put up a post last week saying that the Triple Aim – improving population health, improving the experience of care, improving per capita healthcare cost – was poorly aimed, and totally missing its “make healthcare better” mark. It’s a chewy, tasty read, with an even chewier and tastier thread of comments. The money shot for me: “the real battles over power, money, customer choice, and cost” are indeed still happening far, far away from the point of care, and compromising the patient’s experience, the community’s health, and the ability to control spiraling costs. Of the three legs of the Triple Aim stool, the cost piece is the biggest barrier to its implementation. Can you think of any US industry that would willingly transform itself outta $1T+ in revenue per year? That’s the ultimate economic outcome of the Triple Aim, and I can hear and feel the resistance of the medical-industrial complex to ending their arms race toward “market dominance” via daVinci systems, proton beam facilities, soaring marble lobbies, and equally soaring temples full of hospital beds … when what we really need is hundreds (thousands?) of small clinics across the landscape helping people get or stay healthy via great primary care, not tertiary hospital resurrections. Payers and big health systems, EHR vendors, policy wonks all negotiate over the patient’s supine form (and the heads of most clinicians, to be fair) to determine how to divide up the $3T+/year their arms race serves up. Do we have a prayer of Triple Aim in this landscape? I dunno, but I’m fighting a ground war alongside my patient-side band of guerilla compatriots to see if we can drive some revolution from the grassroots. ‘Cause the folks in suits ain’t moving fast enough toward change.

Spending one’s days on the advocacy beat out here on the Wild Wild Web can be hugely rewarding. Like, say, when you start getting recognized by organizations like the WHO as a strong voice for people-who-are-patients. Then there are the days when you get called f***ing a**hole by strangers for simply speaking up. This is not a unique problem for patient advocates – this happens to anyone who speaks up in service of changing a cultural norm. Just ask MLK, who was trolled by none other than the FBI, who told him he should just kill himself. Imagine the fun the FBI could have had on Facebook, if MLK vs. FBI on Facebook had been a possible-thing in 1964. It can happen in the e-patient game, too, as shown in the Bill Keller/Emma Gilbey Keller/Lisa Bonachek Adams/NY Times dustup over whether or not patient blogs, particularly those about cancer, are TMI (Too Much Information – translation: “ew, gross”). Just being a woman online (guilty as charged) can be enough to draw the gimlet eye, and ire, of a mob of trolls. The #gamergate mess – if you click that link, pack a lunch, a raincoat, and some serious antibiotics – is an example of that. I recently tripped over a compelling piece on the Guardian’s site. The piece, by Lindy West, was about how she had been hard-trolled by someone who had gone so far as to create a Twitter handle that mimicked Lindy’s recently dead father, who she grieved for deeply. And who used that Twitter handle to troll her about her stance on rape threats. My dad was special. The only thing he valued more than wit was kindness. He was a writer and an ad man and a magnificent baritone (he could write you a jingle and record it on the same day) – a lost breed…

Guess who got invited to WHO? No, really. The World Health Organization (WHO) invited yours truly to its First Global Experts’ Consultation in service of building a WHO framework for patient and family engagement. This is all due to my part in the ongoing anvil chorus that is the new Patient & Family Engagement Roadmap, developed by a group of dedicated folks from all parts of the healthcare compass over the last couple years, with funding from the Gordon & Betty Moore Foundation. I spent just over two days in Geneva, most of the time head-down in discussions about how the global health system – a patchwork of services delivered by an even patchwork-ier cadre of healthcare delivery systems – can better serve the needs of the people/patients who seek medical care and health information from them. This post will not attempt to report everything I saw/heard/thought/felt in that jam-packed 16 hours of ideas and outlooks. What I’ll share is my perspective on the challenges, the opportunities, the pitfalls, and the hopes that – in my view, at least – emerged during that lightning round of global spitballing. CHALLENGES There’s an old joke that asks, “What’s an elephant?” The answer: “A mouse designed by a government committee.” That’s the risk, and challenge, to any attempt to build a definable set of standards for a human effort. Education, transportation, trade, infrastructure, communication, medicine – all require some sort of standardization to make them useful to more than one or two people huddled over a campfire. A study of history will show that as much as we humans are great idea generators, trying to get the rest of the tribe to adopt our new idea isn’t easy. The father of quantum mechanics, Max Planck, said it best: “A new scientific truth does not triumph by convincing its…