e-Patient Dave

Toward a New Science of Patient Engagement

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FHIR on the horizon: ten part blog series

I want to let you know about a couple of important developments. First, I’ve started blogging on another site, Tincture, as well as here; second, there’s important news in the world of health I.T. (or personal health data or whatever you want to call it).

First, the health IT news: there seems to be good stuff happening! An international data transfer standard called FHIR (pronounced “fire”) has been in development for years, and is finally nearing the time when it will (we hope) change the world for those of us who want unfettered access to all our health data.

It’s not very visible to the general public yet, but a Google Image search shows tons of different graphics illustrating different perspectives. Google shows different people different things but here’s what I get:

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What’s up with the US health system?? (What I’m doing in 2019, episode 1)

Click to enlarge this composite of images from previous posts

I haven’t been blogging nearly as much as I did five years ago, largely because my early blogging was all about trying to figure out “what the heck is up with the American healthcare system???” and it’s now been two years since I had any new realizations. Here’s a summary of that, then some quick hits on recent and upcoming events.

No, wait – this part turned out long, so I’ll continue tomorrow with the “quick hits.” For today, here’s the baseline I reached two years ago.

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50th anniversary of the first Our Bodies, Ourselves meeting! May 10, Boston

Updates May 8:

  • Address correction! It’s 120 Tremont St, not 20 Tremont St.
  • Not surprisingly, it’s sold out with waitlist. If you want to add yourself to the waitlist, write to cwhhr@suffolk.edu
Click image to register on Eventbrite.

I’ve often blogged and spoken about the many parallels between the women’s movement and the patient empowerment movement. Here’s one perfect quote from Miriam Hawley, one of the founders of the Boston Women’s Health Book Collective, whom I met last year:

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“Superpatients”: join this free webinar for medical librarians Thursday

Tomorrow (Thursday Feb 21) at 2pm ET, for the second time I’ll be presenting the concept for my new book, Superpatients: Patients who extend science when all other options are gone. The first time was December, in a private webinar for the QI [quality improvement] Connect team in Scotland. Registration is open to the public here but that’s optional – at bottom I’ll paste in how you can join it at showtime, without registration. In any case it’s free and no obligation.

Click to register – see details below
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“The Patient’s Perspective – medicine’s new true north” – essay in PLAID diabetes journal

PLAID Journal coverFor the past year I’ve mentioned this in speeches, but I’ve never written about it here:

In November 2014, a routine blood test revealed that my hemoglobin A1C was slightly elevated, making me what they call “pre-diabetic.” (See lab results below.)

Well, that got my attention.

Why? Because, through social media, I know a lot of really smart, articulate, passionate members of “the DOC” – the diabetes online
community – and I’ve learned all kinds of things about the reality of diabetes that you don’t see in the TV commercials.A1c screen capture

I’ve learned that it’s not rare for a basically “healthy” person with diabetes (PWD) to die in their sleep when their blood sugar crashes; I’ve learned about unfixable nerve pain and amputations; I’ve learned about all kinds of things that can go wrong when diabetes gets out of control. I don’t even know enough to make a properly prioritized list, but I know enough to say you do not want to have diabetes if you can avoid it.

(Footnote: it drives many of us nuts when a TV commercial or news story talks about “diabetes” as if it were one thing. It’s not. Type 1 diabetes (T1D) is medically different from type 2 diabetes (T2D), which I am at risk for; it typically arises in middle age, but has been seen as young as age 3. “Diabetes prevention” is an ignorant thing to say: Type 1 can’t be prevented, Type 2 sometimes can. But that’s a rant for another day.)

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