e-Patient Dave

Power to the Patient!

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New presentation: “Failure to share data – both ways – makes medicine fall short.”

As healthcare progresses, my business is changing: new speech topics, and more advisory projects. This is a two-part video of a new speech last month, at the New England chapter of HIMSS (the big health IT systems society). Finally clients are agreeing that there’s more to talk about than “Dave’s scary cancer story” – most of this speech is information that didn’t exist when I started giving speeches. Predictions are coming true, so new imperatives emerge.

The videos: (Email subscribers, if you can’t see the videos, click the headline to come online.)

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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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The difficulty of shopping when they hide the facts: that skin cancer RFP in the NY Times

NYTimes Tina Rosenberg clip 4-12-16$5,000-$7,000?  $1200-$1500?  $868?  What should it cost to remove a simple skin cancer? What if you can’t find out?

Long-time readers know that in 2012 I was on high deductible insurance – and I don’t mean Obamacare-style $3,000 deductible, I mean $10,000 deductible. I chose that gladly, because I had laboriously analyzed the five plans available to me. I know insurance is a game of sharing risks, so I analyzed (it took all my Excel skills) and chose.

What happened next is described in a column in today’s NY Times by Tina Rosenberg, Shopping for Health Care: A Fledgling Craft: within months I discovered I had a skin cancer on my face. I became a highly motivated shopper, and quickly discovered nobody could tell me what would be on my bill.

The details are in several skin cancer posts here. But Tina Rosenberg writes about social problems, and I want to draw attention to the nature of this social problem: it withholds power from the person whose health is at stake, and that’s just plain wrong.

Here’s the World Bank’s definition of empowerment, from a January post:
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Five years ago: a three-speech three-country earthquake week

Longtime readers know that this has been a long hard road, creating a “market” for a patient voice to speak culture change at health conferences. This is an anniversary week worth noting, on several fronts … it’s the fifth birthday of not just my TED Talk, but two other events that bent my trajectory.

First, the TED Talk – I know you’ve seen it, but here it is anyway. Click it (to boost the view count:-)) or just skip ahead.

Photo: Aad van Vliet (Mirella Boot on Flickr)
Photo: Aad van Vliet (Mirella Boot on Flickr)

Strictly speaking the birthday was a week ago – April 4, 2011. I stepped on stage onto the “big red dot” that TED Talks are famous for, and faced an audience of 900 in a theater with two balconies. The place was historic: Maastricht, where the European Union had been formed 19 years earlier. Fifteen minutes before going on stage I’d handed in my revised slides (modified in the two hours after lunch); not to be outdone on the “last minute” thing, waiting back stage, host Lucien Engelen had just told me “You have to do” the e-Patient Rap, created by Keith Boone (@Motorcycle_Guy). (In the talk when I say “a little improv,” I meant it – it was not planned, not even rehearsed.)

Sixteen minutes later, the talk ended with the chant “Let Patients Help!” With a standing ovation happily in my tummy, I stepped off.

#2: Jerusalem – debating with Israeli scholars

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A MOOC about social media in healthcare: opportunities & challenges

FutureLearn Social Media in Healthcare course screen captureThis post is about a specific course, the concept behind its technology, and what it means for the future of learning. For people who know about MOOCs this will be old news; for people who don’t, I hope this will be enlightening. It’s a big change.

For years I’ve heard about MOOCs – Massive Open Online Courses. As Wikipedia says, “…an online course aimed at unlimited participation and open access via the web.” I first wrote about the idea three weeks ago, in Reusable building blocks: a speech by video Q&A, but I’d never touched a MOOC, until recent months when I got involved with one.

It’s a free course (that’s the “open” part) that ended last month, and will start again in two weeks: Social Media in Healthcare. Specifics:
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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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