Recent events and postings, March 14

Corrected Saturday afternoon: “Stanford” should have been “UCSF” (University of California, San Francisco)

Boy, is the pot starting to bubble. Word about participatory medicine is spreading, and there are signs that it’s starting to follow the trajectory of other cultural movements. News and posts elsewhere in the past week: Surgeon: “Participatory Medicine encourages partnership between patient and provider”

There’s a stage in every movement where it starts to get discovered by people in the establishment who weren’t among the founders. And there’s another stage, when that person’s discovery spreads into mainstream media. That happened Thursday, in Richmond VA, when a cardiac surgeon wrote a piece with the title above, including this:

Today, there is a movement afoot — one that is welcomed by me and many of my colleagues. It’s a change that I hope will become the norm when it comes to the physician-patient relationship. It’s all about partnerships between patient and provider.

To hear a surgeon say that – one who just met us recently, at last fall’s Medicine X conference – is hot stuff. It’s especially important that none of the society’s founders were involved – the discussion now has a life of its own. Words Matter – Let’s Reconsider the Term “e-Patient”

When a cultural conversation takes on a life of its own like that, simultaneously you lose control of it and people in the movement start to question what it is and how hard it should push. In the Sixties we saw it over and over again. The same day as the surgeon’s article, a second post showed this pattern: as roles get rethought, people reconsider language. In this guest post the legendary Kate Lorig, creator of the very e-patienty “Chronic Disease Self-Management Program,” goes right to the core: she asks if the “e” has run its course… and, as many others have said, she questions the word “patient” itself. Predictably, it’s generated dozens of comments; if you’re a fan of social change, you should read them. My own view is in the first comment, which is long enough that it needed subheads. On the point of taking control of language, I said:

We saw it happen in feminism (the advent of “Ms,” and experiments with words like “womyn” (Wikipedia). We saw it happen in civil rights with the advent of “African-American,” etc. We saw it with gay rights, where the movement itself declared “The word to use is ‘gay’.”

This is important. I think we’re starting to see dissent in the movement, which is a clear sign of different people taking ownership of their view of what it’s about. That’s a predictable stage in any movement that has a spine. And if ours follows the pattern, someday we’ll see people marching in the streets. Imagine that. But I bet first we’ll see some foresighted leaders steering their institutions into the new era, because they listen. Which brings us to:

Becker’s Hospital Review: 3 Insights on Social Media and Healthcare From E-Patient Dave

I had the pleasure of being interviewed by Helen Adamopoulos for “the leading hospital magazine for hospital business news and analysis for hospital and health system executives.” I say pleasure because she got every detail precisely right, and she got the overall thrust precisely right. That’s rare, because the stuff I talk about is complicated. The interview was about hospitals using social media: stop “talking at people” and listen and engage. I’m thrilled that people are finally seeing the business case for engaging with their public. This stuff ain’t just artsy-touchy-feely.

And in the week before:

  • At the annual convention of the American Medical Students Association (get ’em while they’re young!), I was thrilled to share the opening keynote with the leaders of the OpenNotes study, Jan Walker and Tom Delbanco. We taught them the rationale and evidence for patient access to doctors’ notes. My slides are here; this talk was about information and data, not my usual cancer story.

3 comments to Recent events and postings, March 14

  • Muffincat

    Great to have a nice positive week.

    And gives the e-Patient the E-patient a bit more dutch courage to meet with their health provider on an equal standing.

    No longer am I going to dumb-down myself regarding my condition and diseases.

    I don’t expect for the doctor etc. to know everything, but I expect to be listened to.

    I accept I am complex and don’t follow the rules.

    This is an exciting time, in that patients [for use of a better label] can ask and expect to be listened to and their experience, their empowerment, their educated knowledge be recognised.

    No more “its all in your head”………. no its in our “E”

  • e-Patient Dave

    Classmate Larry Fagan wrote:

    Speaking of Wikipedia errors … the link sends you to an article about a UCSF professor (NOT Stanford) :)

    Thanks – fixed!

    (See, now we know who asserted it was an error, and how it got changed. Wouldn’t you like to see that on all info you read? I would. At least for stuff where accuracy is important to me.)

  • We’re feeling the power too at Big happenings here!

    Glad to be here on the barricades with you, friend, and with so many other brave, true, powerful patients, clinicians and others of good will and strong heart.

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