e-Patient Dave

Power to the Patient!

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“Give em Mom’s Damn Data”: big event on “putting the IT in care transitions”

There’s a seven hour event tomorrow (8-3, ET) that will be live, webcast, tweeted and discussed on Google+. It’s about information transfer during transitions of care. It’s important. Here’s why.

Read Brian Ahier’s post about it on Government Health IT.
Register here.

Anyone with half a brain knows that the right information makes it easier to do the job right. Unfortunately, to a large extent health providers haven’t done anything about getting information into other people’s hands. And harm can result.

Case in point: on July 14 my mom had a total hip replacement in Maryland. My two super-sisters were all over the case, and everything went well. But her discharge to rehab failed. Why? Because those two facilities don’t have HIE: Health Information Exchange. So the rehab place had to transcribe Mom’s information. Manually. As in, retype everything.

As in, typos.

As in, hyperthyroid got mixed up with hypothyroid.

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“A new scientific truth…”

Max Planck, 1918 Nobel laureate
Max Planck, 1918 Nobel laureate (Wikipedia)

Sometimes patients complain when they discover a doctor’s views are out of date, even in the face of evidence. Well, that’s not new: here’s a quote from the guy who won the Nobel Prize in physics, in 1918:

“A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents eventually die, and a new generation grows up that is familiar with it.”
~ Max Planck (Wikipedia)

This quote was cited by Thomas Kuhn in his incredibly important book The Structure of Scientific Revolutions, which recounts the tremendous social barriers to adopting new thoughts. Even the concept of bacteria subjected physicians to ridicule: “Pus is caused by invisible evil creatures? That’s witchcraft!” And in cancer, the importance of angiogenesis (cancer’s ability to grow new blood vessels as its fuel supply) was ridiculed for decades. Same for the bacteria that causes ulcers, and on and on.

Those of us engaged in changing culture – the culture of medicine – often experience this. The establishment “knows it’s right” and disses people whose experience runs counter to it; Kuhn says science is, amazingly, a fashion industry, where if you don’t wear the right glasses or shoes, you’re scorned. (The irony, of course, is that the scientific community is supposed to be evidence-based, and Kuhn established forty years ago that it’s not.)

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“Cancer, Then a Calling” – profile in Technology Review

TEDx photo from Technology ReviewIn September, MIT Technology Review did a month-long series on the era of e-medicine. The last item was a profile of my transition from patient to change advocate, Cancer, Then a Calling. Free registration required.

MIT being MIT, and technology being technology, the column focuses a lot on the “gimme my damn data” aspect: I firmly believe that as consumer/patients are increasingly left to fend for ourselves in an unaffordable system, we must have full access to our (and our children’s) medical records. How else can we make informed decisions??

“Oy vey” troll alert: Somehow this piece has again attracted “StanfordDoc,” an internet troll who trashed me in a comment on another post somewhere. He/she/it has returned with a freshened complaint, beginning:

“So a naive older patient googled his illness and didn’t understand the prognosis and got so anxious his doc sent him to an online support group.. Hmmm very empowered.” [Read more…]

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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.

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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

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A surprise second book: Facing Death – With Hope

This short book has “mysteries of the universe” written all over it.

Earlier this month I escaped for a few days to write a book called Let Patients Help. For whatever reason, this one came out instead: an updated edition of the “Facing Death” chapter from my previous book, with a new prolog to make it a standalone booklet. It wasn’t what I’d planned to write, yet when I finished, I had a sense of peace and completion – like I had completed what I actually needed to do, whether I knew it or not.

Through Amazon’s automated self-publishing tools, it’s already complete, proofed, and ready to ship. The book’s web page, with links to order it in paper or on Kindle, is ePatientDave.com/FacingDeath.

The message is what I saw in my own crisis. The title says hope, but it doesn’t say hope will cure anything; it won’t. Yet there is hope – Jerome Groopman MD’s book Anatomy of Hope says “There is an authentic biology of hope.”

Whatever your path – wherever you are on this journey – I hope my experience will help. And whatever your outcome, this booklet’s about being awake to life while we have it.