e-Patient Dave

Power to the Patient!

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Who gets to say what’s patient-centered? (Hint: the one who’s IN the center)

This is an adaptation of a message I wrote last night to some friends who are participating this weekend in PCORI’s workshop this weekend.  I wish I could be there, but overseas travel was booked for today, months ago.  For newcomers I’ll say more at the bottom of this post, but first, my message to the participants.

PCORI’s charter – its very name – is to develop Patient Centered Outcomes. That raises the question:

Who gets to say what’s patient-centered? We should.

The scientific establishment won’t turn on a dime with this one patient weekend, so what COULD we persuade PCORI and the attending scientists about? My view:

To me the core question of the weekend is: Who gets to say what’s patient-centered? I say, it’s the one who’s in the center. Who else could possibly know if things are balanced around them?

So, I suggest: in any patient-centered outcomes project, patients should participate not just in selecting projects or goals/outcomes (from a scientist-generated menu), but in defining the goals, the desired outcomes, even what they’d like researchers to pursue.

This is a maturing of the patient’s role, and a shift in the researcher’s role to one of partnership rather than “doctor knows best.” The maturing seems to parallel how a kid grows up: [Read more…]

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My daughter gets her E on.

Running cross country, 1999This is giddy; deal with it. :-)

Regular readers know all about my awesome daughter, Lindsey deBronkart L’Ecuyer. The one I cheered on, in high school cross country.→ →

The one I walked down the aisle in 2009, when she married Jon.

Finishing the Boston Marathon, 2012
←The one who ran her first Boston Marathon last spring, in near-record heat, and finished in the middle of the pack.

Jon-Lindsey-Dave in Nice

The one Ginny and I met up with (with Jon) when our vacations crossed paths last summer, in frickin’ Nice. France.→
(Their vacation was much more orchestrated than ours. In some ways she’s not at all like me.)

The one who’s now assistant cross country coach at Marblehead High School, where she’s a science teacher.→

My baby girl, all grown up and adult and functioning in the world. Swoon.

Well, she called me today, all proud and happy and said something good happened today. Something very E.

She’d decided to get a DNA test (she’s always been fascinated with DNA) to see if she could learn more about a particular condition that runs in the family. Having heard a few things (ahem) about the unpredictability of medical bills, she checked carefully to be sure that everything the hospital would charge would be covered by insurance. Yes.

Well, the bill arrived, and oops, the hospital work was covered, but the lab that did the work is out of network!  A $320 bill! Grrr.

So, what does an empowered person do? Rather than blowing up, she first explained her situation to the insurance company.

[Read more…]

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We perform better when we’re informed better

Here’s a short piece I wrote for an event next Monday, October 29, at the Rijksmuseum in Amsterdam, hosted by KPN, the big Dutch telecom firm.  The title is from a slide I used last spring at the Kanter Family Foundation’s Learning Health System conference. After, I’ll discuss the event – and some provocative questions.
___________

People perform better when they’re informed better

The e-patient movement – “empowered, engaged, equipped, enabled” – presents challenges to our culture: it creates new roles, new expectations, and new beliefs about what’s possible. It creates questions in the minds of educated people: can ordinary citizens, with no medical training, handle the truth? Handle new knowledge? Handle information that’s always lived in the hands of trained professionals?

We can’t see the future, but we can look to precedents – many precedents, in my life and long before.

Thirty years ago computer professionals raised the same questions about letting you and me have computers. It was hard to imagine that you and I, not trained as engineers, could understand these tools, much less do anything useful with them. The same happened in my industry – typesetting – when desktop publishing arrived: it was hard for us, the trained typesetters, to imagine ordinary citizens having fonts on those computers and making pages. But you did, and you do. Do you want to go back?

The problem is that our culture is challenged when tools and information reach people who’ve never had them before.

Sometimes the change is radical. When Gutenberg printed his Bible in 1455, [Read more…]

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See you in the Library. Yes, *that* Library.

Screen Shot of the announcement (click to go there)How do you know when an idea is taking root? It’s a question I constantly ask, in both my inside and outside voices, as I travel around banging the drum for listening to patients as a worthy voice in healthcare. Well, this month I got a piece of news that blew my mind so much that it’s taken me two weeks to decide what to say:

This blog is now being archived by the National Library of Medicine.  In their History of Medicine Division.

Their post about it is here. Quote:

The National Library of Medicine has a mandate to collect, preserve and make accessible the scholarly biomedical literature as well as resources that illustrate a diversity of philosophical and cultural perspectives not found in the technical literature. New forms of publication on the web, such as blogs authored by doctors and patients, illuminate health care thought and practice in the 21st century. (Emphasis added.)

… NLM has collected the following examples:

And guess who’s listed first:

e-Patient Dave

…a cancer patient and blogger who has become a noted activist for healthcare transformation through participatory medicine and personal health data rights. Mr. deBronkart writes in this post as a newly diagnosed skin cancer patient who is taking action to make his treatment most cost-effective. …

[Read more…]

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18 short years ago: Bryant and Katie in “What IS internet??”

I’m speaking tomorrow at Dignity Health‘s big physician symposium in Las Vegas. (They’re a big multi-state organization, formerly Catholic Healthcare West; @DignityHealth on Twitter.) Whenever possible I like to listen to other speakers to understand the issues conference organizers think are worth a slot on the agenda. Lots of good thinking at this event.

The current speaker is Deirdre Baggot, [almost] PhD, VP of The Camden Group. She opened with a terrific 90 second video – I can’t believe I’ve never seen it:

(The YouTube description says “This is reportedly footage from between segments that was not originally aired…”)

Think about this. Think about how rapidly things change.

As we work to create a new world of healthcare I think it behooves us to have compassion for people who had become excellent in their trades before THIS came along. And I’m heartened by the knowledge that almost all of us have figured out what that funny little “a in a circle” thing is. Change is possible.

This aired in 1994, the year when the first real browser (Mozilla) came out. And less than a year later, “Doc Tom” Ferguson published his amazing vision of what it meant for healthcare, which I described as “Steal These Slides.”

Bonus clip on teams

[Read more…]

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OpenNotes: The results are in. GREAT news for patient engagement.

In the past year I’ve often mentioned the OpenNotes study. Results are in! This is copied from my post last night on e-patients.net:

Regular readers know that we’ve long anticipated the result of the OpenNotes project. Our first post about it was in June 2010:  “OpenNotes” project begins: what happens when patients can see the physician’s visit notes? It tied the issue all the way back to the birth of the Web, in 1994:

The opening anecdote of the e-patient white paper [20th page of this PDF; 23rd page in the Spanish edition] tells of a patient who impersonated a doctor in 1994, to get his hands on an article about an operation he was about to have. He got busted.

Two years later episode 139 of Seinfeld had something similar – Kramer impersonates a doctor to try to get Elaine’s medical record: (Click to watch it on YouTube; they won’t allow embedding on other sites.)

Now, the Robert Wood Johnson Foundation (RWJF) is funding a study called OpenNotes to explore taking it a big step further: what happens if patients can see, online, every last bit of what their doctors wrote?Do doctors get overwhelmed with questions? Do patients freak out when they read the ucky medical words that doctors write? Does the world go to hell in a handbasket, as some have worried aloud?

The results were released at 5:00 p.m. ET Monday, in a new article in the Annals of Internal Medicine. (See the OpenNotes website.) Co-lead authors Tom Delbanco MD and Jan Walker, RN, MBA shared a pre-release copy with e-patients.net. They describe the study’s intent: [Read more…]