e-Patient Dave

Power to the Patient!

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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

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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.
[Read more…]

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Putting the I (or eye!) in Health IT: ONC’s regional meetings

"Putting the I in Health IT" screen capture

Updating again on August 11 at the Los Angeles meeting.

Updated 7/22 – added several resources and these bullets on connecting. What was I thinking, not mentioning this?? Get social:

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This week I attended the second in a series of four regional meetings being conducted by ONC*, reaching out to the Federally funded organizations that are making health IT a reality throughout the country. I was the Wednesday lunchtime keynote speaker. (What a time slot – there’s nothing like a “How I almost died” story at meal time! But the message came across, deeply. Great people, very dedicated!)

Here are links to resources I mentioned in my speech, and a few more:

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Let Patients Help hits the big TED site!

I learned today (via Twitter!) that TED.com has posted my TEDx Maastricht talk, with its rallying cry “Let Patients Help,” on the TED.com home page. Wow.

For those who don’t know, TED.com is the “real” TED event’s website. TEDx conferences are smaller, independently organized events, with varying formats. So it’s quite a thrill to have a TEDx video promoted to the “big TED” site. [Read more…]

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A Visit to the Emergency Department

Click to go to Hospital CompareLast night my wife and I had occasion to be consumers in the healthcare system: a visit to the E.R. (nowadays called the E.D.) for a flare-up of her foot problem. We used digital resources in two ways: digital x-rays, and hospital quality data provided by the government – your tax dollars at work, to enable informed choice, if you use it! We did.

History:

  • 11 years ago Ginny broke her left foot just before we went on a long trip. The break wasn’t obvious at the time – she’s had foot and leg pain for decades – but during the trip it got really bad. A nurse in Belgium wrapped it tightly, and by the time we got home, it was back to normal, pain-wise – as okay as it ever is.
  • In 2008 a flare-up led us to get a consult at Beth Israel Deaconess in Boston. The ortho diagnosed a  non-union fracture, untreated prognosis – a break that was not recognized at the time and “healed” wrong. The x-rays also showed extensive bone cysts – fluid-filled holes where there should be solid bone. This would make it hard to fix the bones because there’s not enough bone to screw anything into. So, at the time, the patient (Ginny) and doctor agreed on watchful waiting. The cysts also weaken the bone, contributing to pain.
  • Life has gone on, with the ups and downs that are familiar to anyone with chronic pain.

Current episode and decision to act:

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Announcing: e-Patient Boot Camp!

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

I’m thrilled to announce the Next Big Thing (for me anyway!): a full day workshop for doctors, patients, businesses, investors, governments – about the e–patient movement. I’ll deliver it anywhere there’s an audience.

Born of the constant encouragement people have given, it will be launched next month in Silicon Valley. Visit epatientdave.com/bootcamp for the full story.