e-Patient Dave

Democratizing Healthcare

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When Patients Design the Care They Want: the Boston Women’s Health Collective

A slide I often use

In August Medical Futurist Bertalan Meskó and I published Patient Design: The Importance of Including Patients in Designing Health Care in JMIR, in the Journal of Medical Internet Research (JMIR). It ties together aspects of both our work. He’s a medical futurist, less than half my age, with a clear vision of how medicine will work in a future unencumbered by today’s limits. For me, an advocate for patient empowerment, it’s rooted in patients having the power to get the care they want. Our views come together in the idea of patients designing the care they want. From our abstract:

… genuinely empowered people living their lives and managing their health according to their own priorities, in partnership and consultation with physicians as needed. 

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“From #73cents to FHIR”: keynote at the Redox Connect customer conference

Patient voices have been working for decades to achieve access to their medical records, which have always been locked up in the hospital. No more: new rules went into effect on October 6 that mean all your health data must be available for download by apps, online, by end of year.

This so-called “Cures Rule” is part of the continuing work of the 21st Century Cures Act enacted by Congress in 2015. The Act includes many other things to improve development of cures, but for patients a vital new requirement is that health data must now move easily between computers. It’s common sense for everyone in healthcare, and for patients it’s an immense win for justice (fairness): at last we can see about ourselves what the people treating us can see.

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A decade advocating for OpenNotes

Today in an email thread I realized it’s a decade since the OpenNotes work started, via Tom Delbanco and Jan Walker, and now promoted so brilliantly by Liz Salmi. How great that back then my PCP Danny Sands and I were among the first crew of OpenNotes study participants!

I decided to mark the occasion by creating an /OpenNotes page on my site, listing all the blog posts and articles that have emerged as part of the work.

(Interesting to observe: before cancer rearranged my life, I don’t think I ever stuck with any cause for ten years straight. Funny how that happens.)

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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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Events and travels, winter 2019

It’s been a busy winter. Amid all the Facebook scandals and new government regulation work that’s going on, I thought I’d send an update on travels. Here are some visuals from a recent 17 day, six country, seven speech trip. (Fun facts: nine different hotels, and doing laundry in a Vienna laundromat that only takes instructions from a smartphone app.)

The background image is the HIMSS19 (health IT systems conference) logo repeated over and over and over and over, because that brutal exhausting conference is like that :-), and is the background of everything else.

Counterclockwise from left:

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15 Health IT Social Media Influencers Worth following, and more news

Hi, this is Kristin, Dave’s assistant. If you’ve talked to Dave, you’ve probably talked to me. :-)

I’m happy to announce that Dave has again been named to a top social media list as an influencer worth following. This time it’s Health Tech magazine’s list. Not every list like this is great, but this one is – all top in their specialized area.

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