Power to the Patient!
Updated 11/4/2011
This is an ongoing tally of response to the Let Patients Help talk at TEDx Maastricht, April 4, 2011. It went up on TED.com on June 29, got 50,000 views in the first 24 hours, and has since been traveling around the world.
In my last day job I worked in analytics (measuring Web traffic), so of course I’m going to track this baby.
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:
Here are the slides: [Read more…]
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
Preparation
The event itself
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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.
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:
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…]
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:
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…]