e-Patient Dave

Power to the Patient!

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Going global: Let Patients Help Europe Tour, Fall 2013

Euro tour map Nov 2013
Map created by www.travellerspoint.com. Fun and free!

Let Patients Help is a successful book, but in the early days of its movement, it was common to hear skeptics say “This is only in America.” Boy was that wrong.

The first massive proof was TEDx Maastricht, the seminal event constructed by Lucien Engelen from Radboud UMC (university medical center) in the Dutch town of Nijmegen. It was such a big deal – the first conference I know of anywhere that was totally focused around patients … so many patients that a blogger Grand Rounds was devoted to videos of the talks patients gave at that event.

It was the first time anyone heard the chant “Let Patients Help” in a TED Talk, and the response has been enormous: almost a half million views so far on TED.com. TED says there’s usually the same number on other sites, so that means almost a million views. Volunteers have added subtitles created in 26 languages, so I’d say it’s not “only in America.”

This fall, Europe goes “e,” big-time, with four events in one month.

In November four events in four European customers will focus on Let Patients Help, all driven by visionaries who are seriously working on patient engagement – in Athens, Budapest, Amsterdam and Brussels.
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My view of patient experience: “care that’s more caring.”

Pat Rullo of Speak Up and Stay Alive RadiOh! (Twitter @SpeakUpRadioh) is writing a piece for the Association for Patient Experience, whose board chair is Dr. Jim Merlino, Chief Experience Officer at the Cleveland Clinic. (Jim and I had a 7 minute hallway interview at TEDMED 2012; video is at bottom of this post.) Pat wrote, asking “your personal definition of the patient experience … It can be one word – one sentence – or as long as you choose. What does the patient experience mean to you?”

I get a million requests like this (“please write something for us”), and mostly I have to say no, because my backlog of broken promises and overdue blog posts is embarrassing. But I responded to this one because

  • It’s a short, focused question
  • It’s directly aligned with thoughts I’m already working on
  • I can blog the result. :-)  (That’s a method I learned years ago from the amazing Ted Eytan of Kaiser.)

Here’s my response: [Read more…]

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I’m a Mayo Clinic social media “Fellow”

MCCSM Platinum Fellow BadgeIf I were the usual blogger I’d say “I’m humbled to say…” but honestly, I’m THRILLED! to say that today at the Mayo Ragan Social Media Summit at the Mayo Clinic, they announced a new Social Media Fellowship, and I was appointed to the inaugural class – the first five people appointed to this honor.
Platinum Fellows listTHRILLED. What more could I say?? At left is the list of the five of us – all friends of mine! We’re gonna have a virtual kegger.

Here’s the Fellows Program web page, which includes the 4 minute YouTube below. Around 2:50, center director Lee Aase describes this as “a lifetime achievement award … to recognize people who have made exceptional contributions to advancing the practice of social media in healthcare.” Woot.
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Resources from today’s lecture at the World Parkinson’s Congress

Major updates made Sunday 10/6.

Panorama of World Parkinson Congress auditorium

Today I had a rare privilege and challenge: I spoke to a kind of audience I’d never addressed before – the World Parkinson Congress in Montreal. I was one of four speakers in a two hour session “New Views of Managing Parkinson’s Disease”; we each had 25 minutes plus Q&A. Above is a photo I took from the stage – a big hall at the Palais de Congres, with over 2,000 in the room.

Click to visit the book's sale page
Click to visit the book’s sale page

I composed a talk about patient empowerment (in the context of Parkinson’s) based on things I’d learned about the disease community – and, importantly, research issues – from two good friends with the disease, Sara Riggare of Sweden and Perry Cohen of DC. They must have coached me well, because four times I was unexpectedly interrupted by applause. It was webcast, and video of the session should be published in a day or two.

One item I noted in the talk was a brand new, magnificent book [right] that was launched at the conference, conceived, written, edited and produced entirely by patients. In my view this book is the instant exemplar of how patients can define their disease to the world: the experience of getting the diagnosis, exploring treatment options with each other, coping with life with the disease, and much more. It’s a gorgeous, browsable, full color coffee table book – you can jump in anywhere. More on this book later.

Here’s a version of today’s slides, modified to be more understandable without the audio:

There was enough interest that we added an unscheduled breakout session in a side room – thanks to organizer Eli Pollard for her quick response!

The unplanned session truly had no plan – we started talking and taking notes. In a sense this was an example of a point I make frequently: patients know what patients want to know. It was great to see the fire and hope in the eyes of these patients and caregivers who want so much to define the future on their own terms, given the constraints of the future they own. I took notes as we talked (using the room’s projector) and promised to publish them.
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Hey Watson! Let patients help!

USNews Watson article (click to visit)Katherine Hobson has a new article about IBM Watson in the US News and World Report Best Hospitals issue:

The IBM Wiz Kid’s Work on Cancer
Watson’s foray into oncology is only the first baby step toward applying “big data” to thorny medical problems.

As this giant Jeopardy-winning supercomputer continues its venture into medicine, it’s fascinating to watch, but I continue to scream “WAKE UP!!” to anyone at IBM who’ll listen, because I think there’s a vast opportunity that’s not being pursued. And we need it! (I’m quoted at the end of the article, opining on this.)

What they’re doing

I love that they’re exposing Watson to gobs and gobs of previous cases, as the article describes, so it can sniff for patterns. If there’s one thing a well programmed computer can do, it’s sniff for familiar patterns.

And I love that they’re using it to suggest diagnoses and treatments to the doctor, not make diagnoses or recommendations. (I’ve long said that I doubted IBM’s lawyers would want to be anywhere near liability for a wrong diagnosis and its consequences!) An “information-suck-and-sort” machine should do just that.

(At least for today. Who knows what we’ll think in a few years; I’m not in a position to predict.)

What they’re not doing (yet)

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“Typesetters have proofreaders. Doctors don’t.” Let Patients Help!

iHealthBeat screen capture (click to visit the article)
Click to visit the article

Please see the “call to action” at bottom of this post: if you have a story of patients improving the chart – or a provider preventing it – put it in a comment on iHealthBeat.
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I have a new essay in iHealthbeat’s “Perspective” feature: Patient Participation: Let Patients Help With Medical Record Quality, Completeness.

This was a pretty great invitation. As it says at the bottom of the site, “iHealthBeat is published daily for the California HealthCare Foundation by The Advisory Board Company.” CHCF (the foundation) has done a ton of great work over the years at understanding the practical realities of medicine as it works out for families and communities, and The Advisory Board Company is a respected, high profile company that advises health leaders of all sorts. So when Managing Editor Kate Ackerman wrote to me – six months ago! – inviting an essay, I was thrilled:

I wanted to see if you’d be interested in writing a Perspective article for iHealthBeat on the importance of patient engagement in health IT efforts. Here’s a link to our Perspectives archives so you can get a better sense of the feature: http://www.ihealthbeat.org/perspectives-archive.aspx

One never knows why the timing works out the way it is, but it didn’t work then, and when she asked again recently, it did. Of course, back then the angle wasn’t clear to me, and this time it was: Typesetters have proofreaders; clinicians don’t. Let patients help!

If you want to support the movement, see if there’s something you could add an anecdote in the comments on that post – a story you know, first-hand or close, where patient and family engagement in the medical record prevented a disaster. Or helped in some smaller way.