e-Patient Dave

Democratizing Healthcare

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Ask the Patient feature, on QuantiaMD

QuantiaMD screen captureI was thrilled to be engaged by clinician network QuantiaMD to do an “Ask the Patient” feature. (I get a small stipend.) It’s live, and available for public viewing. Free registration is required to view their videos; you can preview the first minute or so of each one without registering.

We often talk (here and on e-patients.net) about patient social networks and how they help spread ideas and information. Well I’ll be darned, it turns out doctors and nurses are doin’ it too, with similar benefits. Who knew? :-) And you know I was thrilled that they’ve added a new feature, “Ask the Patient.” Here’s hoping every clinician community does the same. Let Patients Help!

It works like this:

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Register now: e-Patient Boot Camp’s American debut

Registration is now open on EventBrite!

New York City – Friday, January 27.
Hosted by Edelman – the leading independent global PR firm

Boot Camp graphic. Click to go to Boot Camp page.
e-Patient Dave lecturing at FutureMed, at Ray Kurzweil's Singularity University, NASA Ames Research Center, Mountain View, May 2011

Patient engagement is reshaping healthcare. Learn how. Learn why. Learn what to do.

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First “e-Patient Workshop” – patient groups and their docs starting participatory medicine

As I said Thursday, I spent the week at University Medical Center Nijmegen, an hour’s drive southeast of Amsterdam, where Lucien Engelen heads up a program called REshape – reshaping healthcare with patients truly at the center. I mean, at the center – not just the topic of discussion.

On Wednesday we held the first e-Patient Boot Camp, the six hour intensive, in-depth compilation of topics. That was a thrill – to see an action-oriented academic medical center seriously sinking its teeth into what this all means and what they can do with it, starting this week. And the night before we had a terrific prolog: an “e-Patient Workshop,” conceived and organized by REshape’s Stan Janssen. Here’s what it looked like:

(Stan is standing next to the screen.)

We started with lecture – the basics of e-patient-ness. But this time it was different, because the audience was six groups of patients with a common disease, each with one or more physicians who treat that disease, at that hospital. It was the first event I’ve seen where a hospital got to work on making participatory medicine a reality: patients networking, working closely with physicians, who welcome them as partners.

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Interview and Boot Camp with Lucien Engelen at REshape Academy

Updated October 10: Added transcript of the video, at bottom.

On Tuesday morning, my Dutch colleague Lucien Engelen (Twitter @LucienEngelen) took me to the production studio in the attic of his little office and we shot this interview. I had no idea what questions he’d ask, and this was my day for jetlag confusion after a Saturday night redeye from the US. He edited it down, and boom, instant TV show! I’ll explain the context in a moment, but first, the interview (13:37):

e-Patient Boot Camp poster (click for PDF)

Here’s a companion article (in Dutch) in Thursday’s “Skipr” (Dutch health newspaper) about REshape, including this video and an audio interview (also in Dutch) with Lucien.

The setting: Radboud REshape Center

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Special event: TED Conversation on “Let Patients Help”

I’m having so much fun with this TED video (see earlier post) that I hardly know what to say. The best thing is that the simple message “Let Patients Help!” is spreading around the world – it’s got over 180,000 views so far, and volunteers have added subtitles in nine languages – most recently Persian (Farsi) and Korean. People are passing it from friend to friend to friend – clearly, this has tapped into a universal desire: let patients help heal healthcare.

Yesterday the TED people even gave it a vanity URL: http://on.TED.com/Dave. How fun is that??

The next big thing is a live “TED conversation” Wednesday at 1:00 p.m. EDT (10 a.m. Pacific, 7:00 p.m. in Central Europe, etc). The topic ties into one of the key statements in the video: “Patients are the most under-utilized resource” in healthcare. The question:

Why is the patient
the most under-used resource in healthcare??
How did that happen??

To participate, some preparation is required; instructions below:

About the event

  • TED Conversations are online discussions about TED-worthy topics. Many are started by members of the TED community; you can start one yourself. Here’s the Conversations page.
  • Some Conversations are live one-hour discussions about a question that’s been proposed by a TED speaker. That’s what this one will be.
  • The question is posted a day in advance, at 3 pm ET. Comments will not be open until the event starts.
  • You’ll be in a group discussion room, typing with other people. People post questions, and I’ll see them and answer as much as I can. (A moderator will be watching for spammers and trolls.)

Preparation

  • Create a TED.com account. Do this now, before the event: http://www.ted.com/pages/114
  • Start thinking now about what you’ll want to say during the event.
  • Tell friends, if you want.

The event itself

__________

Where did this speech come from, anyway?? Who started this?

It happened at TEDx Maastricht, a distinctive, terrific event last April 4, in the south Netherlands city of Maastricht. (Here’s a Blogger Grand Rounds post with many videos from the event.) Perhaps most significant, the first speaker announced for that event wasn’t a big name celebrity, it was a patient. Just a patient. And that’s what the event was about: putting the patient at the center of the whole health conversation.

Next year’s event is already scheduled – April 2, 2012. I’ll be in the audience if at all possible, because there were some sharp talks, and event production was excellent.

TEDx Maastricht is produced by Lucien Engelen, “health 2.0 ambassador, speaker, author and Director of the Radboud REshape & Innovation Centre at UMC St Radboud in Nijmegen.” Reshape? Yes – as in, taking healthcare apart and putting it back together, better.

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On anniversary day: Thanks to you who saved me.

I’ve added a few updates since the original post, as I thought of more details.

Today, July 23, 2011, is the fourth anniversary of my last dose of HDIL-2 (high dosage interleukin-2), the treatment that rapidly reversed the course of the cancer that was killing me. I haven’t had a drop of treatment – and thus not a single side effect – since then. Nobody can predict the future, but this I know: I am well.

I believe in acknowledging those who make a difference, so here we go:

Dr. McDermott Thank you, Dr. David McDermott, my oncologist. When my ACOR.org kidney cancer peers listed the best docs to seek, you were on that list. And I was so glad I was already being steered toward you. Thank you for your excellence, for the work you did to get there (all the hours and years of study), for your dedication in seeking more and better treatments for other patients like me. I know most kidney cancer patients don’t have as good an outcome as I did, and I imagine it’s hard to work with so many who die.

Thank you too, for your gentle nature and willingness to answer my questions by email. I often tell people how I misunderstood “craniocaudal,” scaring myself with a misunderstanding of the numbers I read, and when I apologized, you – tops in your field – replied, “I am happy to field your questions.” Thank you for being a modern, participatory, super-smart doctor.
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