July 23, 2011 By e-Patient Dave 8 Comments

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:

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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July 21, 2011 By e-Patient Dave 7 Comments

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

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:

Follow me on Twitter @ePatientDave
If you want to friend me on Facebook, puh-leeze tell me where you came from – it’s ordinary social media etiquette.

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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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June 29, 2011 By e-Patient Dave 15 Comments

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…]

June 21, 2011 By e-Patient Dave 3 Comments

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.

May 10, 2011 By e-Patient Dave 15 Comments

Grand Rounds, May 10, 2011: TEDx Maastricht – Patients Rising

Welcome to Grand Rounds for May 10, 2011!

I have a confession: I’m new at this. My initial exposure to Grand Rounds a while back gave me a warped view, and as I worked on this project, I was a little bit graceless. (Those of you who wrote to me about it know what I mean. I meant well…)

This week’s theme is the TEDx Maastricht conference that happened April 4. But first –

These news highlights were submitted:

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May 8, 2011 By e-Patient Dave 3 Comments

How Social Networking Drives Value in Health

Yesterday while working on a new seminar I’ll be offering¹ about patient engagement, I met a new Twitter friend, Mark Harmel (@MarkHarmel), and we talked on the phone for a while. (For some reason my thoughts progress best when I’m in spoken dialog.)

Mark is a healthcare photographer, social media consultant and in 10 days he becomes a public health graduate student. Check out his awesome post about photographing Paris. He’s pretty new to all this “e” stuff, so I talked through my content with him, which helped me fit it to the timeline.

Overnight he emailed about the value of knowing some wonderful, caring doctors. Replying this morning, I had a thought about why patient social networks are so game-changing: they create a new source of value from existing resources. I wrote:

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