e-Patient Dave

Toward a New Science of Patient Engagement

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Geneva, Monday June 27: evening keynote open to the public!

Click to visit press release page
Click to visit press release page

Next Monday, June 27, I’ll be doing something really fun: an evening keynote at a medical conference in Geneva, Switzerland, open to the public. If you know anyone who can get there, please invite them! It’s just 20 Swiss francs (about US$21), and simultaneous translation will be offered.

The conference is NI2016 (Nursing Informatics 2016), whose theme this year is “eHealth For All.” My talk is from 6:20 to 7:20 pm, followed at 8 by a fashion show featuring wearable technology.

The conference will provide simultaneous translation into German and French, and a delegation from China will have its own simultaneous translator.

I’ll take a moment here to mention four international editions of my signature book Let Patients Help, because of the international nature of this event – and because three translators will be present:

French, German and Chinese editions
(and Spanish)

Let Patients Help is available in eight languages, a real sign that participatory medicine is not just an American thing – it’s becoming a global movement. In addition to English, four languages are relevant to this event:

  • Christine Bienvenu
    Christine Bienvenu

    French: Impliquons les Patients!
    Christine Bienvenu (right), translator of the French Kindle edition, would love to find a publisher or sponsor for a print edition. Come meet her!

  • German: Lasst Patienten mithelfen! is Part 1 of the German e-patient textbook Gesundheit 2.0.
  • Chinese: 请患者参与 (available only in China … this may be of interest to the Chinese delegation)
  • Spanish: ¡Dejad que los pacientes ayuden! I mention this because its translators, Elia Gabarron and Luis Fernandez Luque, will also be present.

Again, if you know anyone in the area, please do invite them. Thanks!

 

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An examined life in an unfolding movement

Yesterday I wrote about a mistake I made last year at Medicine X, behaving unfairly to a volunteer while over-tired. At the end I said “I believe in introspection – ‘the examined life,’ as they say – and continuous self-improvement,” and that I’d be saying more about what I’ve learned.

In potentially troubling times, what makes a difference is what you’re committed to, because that’s where your compass points even when things get bumpy. My goal in this essay is to close out the episode having learned something. Here’s what I see.

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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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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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Reusable building blocks: a speech (to the Philippines!) by video Q&A

Click to watch the video series in “couch mode” (autoplay) on Vimeo

One of the major enablers of the e-patient movement is the internet. In addition to serving as a vast widely-accessible library, it provides “information capillaries” that make it possible for vital information to flow to the point of need – without centralized control. My life is just one of many that’s been saved by this radical change in what’s possible.

Another mechanism is that the Web has made possible a truly incredible collection of tools by which we can assemble combinations of things that we find useful – again, without any centralized control. One example of this is MOOCs (Massive Online Open Courses), which I’ll be writing about more soon: the content for a course is made available to anyone who has internet access, which is enormously different from requiring that someone travel to the school.

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“Let patients help reinvent radiology” (my first Periscoped speech)

Tuesday night in Chicago I gave a 28 minute talk for Philips customers at the huge (56,000 people) radiology conference, RSNA. The leading-edge social media guy at Philips, Noah Harpster (@PhilipsLiveFrom), broadcast it live using the free Periscope live-streaming app (owned by Twitter), and boom, here’s the archive. Unpolished, raw, live. Free.  (Email subscribers, if you can’t see the videos below, click here to view the post online.)

This is the first time I’ve spoke to radiologists. This talk has very little about my cancer story, and a lot about the impact on professionals of two things:

  • When assets digitize, things change fast
  • Information makes new things possible

I also pulled out some props – including a 3D printout I had done locally of my lungs (my bronchi and metastases). I told you that when things digitize, new stuff becomes possible.

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