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October 4, 2021 By e-Patient Dave 1 Comment

New podcasts & webinars #1: “Interoperability & Equity” for HIMSS

There’s been an interesting surge in evangelist activity recently: I’ve been involved in several podcasts and webinars, all giving new life to the “gimme my data” movement. Here’s one that went live today on the HIMSS Learning Network. (It’s free but you may need to register.)

[Read more…]

Filed Under: FHIR, Government, Health data, Media coverage, Participatory Medicine, patient engagement Tagged With: fhir, health data, interoperability, patient empowerment, patient engagement 1 Comment

September 26, 2020 By e-Patient Dave Leave a Comment

“My doc’s practice closed. Need my chart. What do I do?”

That’s a paraphrase of the starting tweet in a valuable thread today from a colleague in OpenNotes, Cait DesRoches. Here are the tweets. (I hope this all comes through on the blog; email subscribers, if necessary, click the headline to read this online.)

Hey med records experts – I need a consult. My sis needs her records from an independent prac that closed. She’s tried calling. Where should she go next to escalate the request? She’s in NYC @GraceCordovano @HealthPrivacy @ePatientDave

— Cait DesRoches, DrPH (@cmd418) September 26, 2020
[Read more…]

Filed Under: FHIR, Health data Tagged With: health data, health IT, medical records, open notes, OpenNotes, patient advocates, patient empowerment Leave a Comment

June 21, 2019 By e-Patient Dave 2 Comments

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:

[Read more…]

Filed Under: FHIR, Health data Tagged With: fhir, health data, health IT, patient empowerment, personal health data 2 Comments

April 28, 2019 By e-Patient Dave 8 Comments

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.

[Read more…]

Filed Under: cost cutting edition, Evolution, Health policy, Patients as Consumers, The Big Ugly Tagged With: american healthcare, health costs, patient empowerment 8 Comments

April 11, 2019 By e-Patient Dave 4 Comments

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:

[Read more…]

Filed Under: Culture change, Health policy, Innovation, Leadership Tagged With: culture change, feminism, our bodies ourselves, patient empowerment, patient engagement, women's health 4 Comments

February 20, 2019 By e-Patient Dave 1 Comment

“Superpatients”: free webinar for medical librarians [February 2019]

Update: here’s the archive recording of the webinar.

Original post:

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
[Read more…]

Filed Under: Participatory Medicine, patient engagement, superpatients Tagged With: e-patients, healthcare, medical librarians, nnlm, participatory medicine, patient empowerment, patient engagement, patient experience, superpatients 1 Comment

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