e-Patient Dave

Power to the Patient!

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A mistake, and an apology to Medicine X

Medicine X 2016 promo graphic

In life, in relationships, and in social movements, sometimes things get messy. Despite all the things I’m committed to, I made a mistake last fall while extremely over-tired, and behaved offensively to someone I didn’t even know, a volunteer at the wonderful Stanford Medicine X conference (MedX), about which I’ve written so favorably here and on e-patients.net and even in the BMJ. They’ve decided to ask me to sit it out for a year (i.e. not attend), and I accept it – it’s reasonable. I apologize to MedX and I apologize to the volunteer.

I believe in introspection – “the examined life,” as they say – and continuous self-improvement. So later I’ll say a bit more about what I’ve learned while thinking about this. (Update: that post is here.)

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This.

Graphic Recorder's depiction of Lucien Engelen's keynote at the Joule Innovation Forum

Here it is, all in one picture: the future of healthcare. At least a lot of it.

These are the topics Lucien Engelen has been talking about, the concepts he’s been developing, since arriving at Radboud University Medical Center (RUMC) in Nijmegen, The Netherlands. You MUST pay attention to what he’s thinking about, because it’s coming, and most people don’t know it yet. So study that picture.

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Beyond Empowerment: Patients, Paradigms, and Social Movements

It’s time to move beyond empowerment and engagement, and get to the deeper issues.

For 18 months it’s been increasingly clear that the nature of this work – at least mine – has moved beyond surviving cancer (though that’s great), beyond “Gimme my DaM data” (though that’s true). It’s time to examine the core beliefs that hold medicine back from achieving its potential – its mistaken conceptions about what patients can do and should be supported in doing.

So when Susan Carr, editor of the excellent Patient Safety & Quality Healthcare, asked last summer if we should do another piece, I proposed that we pick up where I left off in 2015 as Mayo’s Visiting Professor: let’s examine whether it’s time to formally examine “the paradigm of patient”; to rigorously ask whether establishment medicine’s conception of what “patient” means – especially what patients are capable of, and should be empowered to achieve – needs to be updated. If we get that wrong, then business and science and policy can’t possibly get it right.

The resulting interview is here – they made it their cover story! You can jump to that link, but if you have a moment, I’d like to say more about its background, and why this is important.

Problems in a paradigm are not to be taken lightly.

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“Knowledge is Power. Power to the people.” (Guest post for Philips Healthcare)

For healthcare to achieve its best,
empower the patient and family.

Here’s a composite of four quote graphics Philips tweeted yesterday for World Cancer Day:

Memes Philips tweeted with links to the post

I’ve had the good fortune to cross paths with Philips Healthcare several times, most recently for a speech (video) at the big RSNA radiology convention in Chicago. I just love what they’re doing in partnership with REshape and Innovation Center at Radboud UMC, where my crazy-amazing friend Lucien Engelen is rapidly creating the future of health and care with Philips and Salesforce.com. Seriously: watch what will come out of that threesome!

So when Philips asked me to do a guest post for yesterday’s global #WorldCancerDay, I said sure. It ran on their blog yesterday.

“Knowledge is Power. Power to the people.”

For healthcare to achieve its best, empower the patient and family.

When social change meets innovation, new things become possible. That’s what’s happening in the patient world, as “participatory medicine” is empowered by patient access to all kinds of useful information.

When the Web was born the term e-patient was coined by “Doc Tom” Ferguson to describe a new kind of patient, no longer in the dark but thoroughly empowered to achieve new things – because they have unprecedented access to information. The idea has matured and deepened, and now, ten years after Ferguson’s death, is coming of age with the signature catch-phrase ‘empowered, engaged, equipped, enabled’.

It’s a moment we should celebrate, because for too long medicine has edged away from the changing landscape of consumer power. Every industry from music to travel to supermarkets has gone digital, sharing knowledge and power and flexibility with their consumers, but medicine has lagged behind: many are not on board, and it’s holding healthcare back.

This is serious stuff: the information revolution has touched my medical life more than once – sometimes in life-saving ways:

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Fighting for social change: on Martin Luther King day, meet Marshall Ganz

Moyers Ganz interview screen capture
Click to watch the interview (33:43) on the Bill Moyers site

Last Friday I posted about what I see as the coming culture war, continuing the theme of last year’s posts about the need to change medicine’s beliefs about the role of patients in health and care.

Today, for Martin Luther King day, I want to talk about what it takes to create a movement that really does accomplish change.

Marshall Ganz is a master of movements. I first heard of him during a retreat in 2012; you can see on his Wikipedia page all the movements he’s been involved with, from the Freedom Riders in Mississippi to the United Farm Workers to the Obama campaign. Successful movements.

What does that take?

Here’s how PBS’s Bill Moyers introduced his 2013 interview with Ganz:
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