e-Patient Dave

Power to the Patient!

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Thanksgiving. BOY do I give thanks.

For superb doctors: primary Danny Sands, oncologist David McDermott, urologist/surgeon Andrew Wagner, orthopedic surgeon Megan Anderson.

For superbly skilled and caring nurse practitioners and nurses, starting with Kendra Bradley (who “got me” as a patient instantly and knew my needs, due partly she says to her years in pediatric oncology), Gretchen nee-Chambers now-something, Virginia Seery, MeeYoung Lee…

For the power of patient communities, particularly my KIDNEY-ONC group (managed by Robin Martinez) on ACOR (founded by Gilles Frydman).

For Paul Levy, who was CEO of Beth Israel Deaconess when I was “doctor-shopping” in 2003. I’d known him in college a bit, and hadn’t seen him much since then. But when I asked if BIDMC had primary doctors, he said “You’ll probably like this guy,” and connected me to Dr. Sands. A direct hit.

And I’m thankful for the world-changing wisdom of thought-leading organizations like Robert Wood Johnson Foundation, California Health Care Foundation, and Pew Research, especially the Pew Internet and American Life Project. (Actually Pew doesn’t lead thought, they just “count rocks,” socially, and report the facts. But that in itself is an innovation, in a world overloaded with opinion about what’s happening and what’s not.)

It thrills me, no end, that I’m alive to help advance the cause of better healthcare, both to aid the clinicians who did so much for me and to offer a lifeline to the many many patients who, every day, get news they didn’t want to hear. So much is at stake, and thank you – all – so very much for your work in this cause.

Blessings.

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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Sometimes patients complain when they discover a doctor’s views are out of date, even in the face of evidence.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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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.

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Stifling Primary Care: Why does Medicare/Medicaid Still Support the “RUC” Rate Setting Cabal?

This isn’t directly involved with my causes of patient engagement and participatory medicine, unless you believe that a patient engaged in their health wants to know the best way to be healthy (duh) and thus avoid the need for health care. It keeps costs lower and keeps the family out of the hospital – good deal, huh?

The best way to do that, of course, is with prevention and good primary care. So you’d think preventive services would be the most highly valued.

Well, they’re not, and a major reason is that there’s been a secretive rate-setting cabal for twenty years, which decides who’ll be paid how much. And those people vote, year after year, to pay primary physicians less, and pay specialists more.  To quote a Wall Street Journal article last fall:

Three times a year, 29 doctors gather around a table in a hotel meeting room. Their job is an unusual one: divvying up billions of Medicare dollars.

The group, convened by the American Medical Association, has no official government standing. Members are mostly selected by medical-specialty trade groups. Anyone who attends its meetings must sign a confidentiality agreement. …

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