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October 1, 2011 By e-Patient Dave 7 Comments

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.

[Read more…]

Filed Under: Events, Participatory Medicine, patient engagement, public speaking, Uncategorized 7 Comments

September 29, 2011 By e-Patient Dave 4 Comments

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

[Read more…]

Filed Under: Events, Government, Participatory Medicine, public speaking 4 Comments

August 31, 2011 By e-Patient Dave 6 Comments

ACCEPTED! – Vote for my proposal for South By Southwest! “Let patients help: Why healthcare must wake up”

Update 10/24/2011: I just learned this proposal was accepted. Wow.

Click to view my proposal and vote for it

Okay, so I’ve been online forever and I’m supposed to be savvy. Well, so sorry, for this big deal event I’m a clueless goon: South By Southwest. AKA, SXSW.

I won’t even try to explain it because I’ll get it wrong but it’s A Big Deal every March in Austin TX, with a huge culture of its own. People (like me) who aren’t in the in crowd are befuddled. If you don’t know about SXSW, read its history on Wikipedia. Or, just do as I command:

  • If you don’t already have a free account, create one.
  • Click here to view my proposal. (Details below.) Sign in if necessary.
  • Click the Thumbs Up button:

Here’s the thing: VOTING CLOSES FRIDAY. Yeah , I messed up – didn’t understand the process, and got too busy with life (and “vacation”). So it’s deadline time. NOW.

So VOTE NOW, and bring all your friends and family.  If, that is, you agree that healthcare must wake up and let patients help.

Details of my proposal

Here’s the text of my proposal, with a few additions:

Description As boomers age, healthcare’s in a nutcracker: a surging population of elders waits to be served by a rising shortage of doctors and nurses. It will be a healthcare famine – extremely unpleasant for all involved – if we don’t change things fast. We must empower and enable patients and families to do more themselves.

That’s the point of the e-patient movement – Empowered, Engaged, Equipped, Enabled – identified in the 1990s by Austin resident “Doc Tom” Ferguson MD. The internet is a massively useful resource for healthcare, if we use it well: it can connect us with others who share our needs, and connect us with information – invaluable medical information – sometimes information that our own doctors haven’t seen, because they too are overwhelmed by an information explosion. Who can keep up??

Patients can help. Yet we’re not only ignored by most of healthcare, we’re often discouraged from applying our minds and energy to helping the cause. This talk lays out the evidence that patients CAN contribute value, and healthcare MUST accept it – urgently.

Questions
Answered
  1. How has the internet changed the balance of power in healthcare?
  2. What are the overlooked drivers of healthcare’s dysfunction?
  3. Are Google/Binging patients an insult to doctors? Why or why not?
  4. How is it possible that people without medical training can add value to a medical crisis? (Seriously.)
  5. What are the “Gimme My Damn Data” and Blue Button movements, and how can they enable revolution?

Filed Under: Events 6 Comments

August 30, 2011 By e-Patient Dave Leave a Comment

Dartmouth Summer Institute for Informed Patient Choice: Who can fix health care? Let patients help!

Click to visit SIIPC siteI’m speaking this morning at the Summer Institute for Informed Patient Choice. It’s a big-deal event in the world of Shared Decision Making (SDM), a topic I’ve written often about on this blog and on e-patients.net.

Here are links to resources mentioned in my talk.

  • TEDx videos: “Who can fix health care? Let patients help.” It amazes me that the two of us knew nothing about each other’s talk, but these talks fit together as if they were choreographed:
    • Al Mulley’s talk at TEDx Dartmouth, March 2011: Who Can Fix Health Care?
    • My talk at TEDx Maastricht, a few weeks later: Let Patients Help
  • Engagement Behavior Framework from the Center for Advancing Health (CFAH). This model, announced in May, is valuable as our movement grows: “Okay, we agree that it’s good to have engaged patients. What specifically does that mean? How can we get to work?” CFAH’s framework answers it:
    • [Read more…]

Filed Under: decision making, Events Leave a Comment

August 4, 2011 By e-Patient Dave 1 Comment

Links for the Consumer Stakeholder working session

Here are links to resources I mentioned in today’s session. First, I forgot to mention – the National eHealth Collaborative (NeHC) has started a great Consumer Consortium in Washington, bringing together over 150 consumer oriented groups. They’re accumulating a substantial inventory (list) of tools, links, resources – all kinds of things to encourage consumer engagement. Encourage groups to join!

Today’s slides are at bottom. Here are the items I mentioned in today’s talk:

  • VA’s “Blue Button for All Americans” challenge – $50,000 to the first PHR developer to install one in 25,000 providers. (Click for details.)
  • Example apps told to us by patient groups yesterday:
    • i-Inject Injection Tracker (for MS and anything else)
    • Parkinson’s Toolkit, from the National Parkinson’s Foundation
    • Seizure Tracker – developed by a parent
  • Visible Body (a paid product with free demo) – I’ve proposed someday “mashing this up” with our own scan data or other data, to create “Google Earth for my body”
  • Google Body Browser – a very very primitive free alternative
  • Blog posts about the Robert Wood Johnson-funded OpenNotes project
    • My first one, including the Seinfeld episode
  • TED talk by Wired editor Thomas Goetz about redesigning our medical data
  • “Consumer” or “Patient”? My post last December.

Here are the slides: [Read more…]

Filed Under: Events, patient engagement 1 Comment

July 26, 2011 By e-Patient Dave 3 Comments

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

  • As 1 pm ET approaches, sign in and go to the event URL http://www.ted.com/conversations/4547/live_ted_conversation_july_27.html
  • Questions will open when the event starts, at http://on.ted.com/ePatientDaveQA
  • Post-event, the discussion will stay open online for one or more weeks.

__________

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.

Filed Under: Events, Participatory Medicine, patient engagement, public speaking 3 Comments

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