e-Patient Dave

Democratizing Healthcare

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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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Call for entries: four patient innovators will win a trip to Amsterdam! Are you one?

Have you done something useful with your medical data to help manage your health? (Or someone else’s)

Perhaps others would find it useful… either your exact tool or your general method! In any case, share it with us, and maybe you’ll get brought to Amsterdam for …

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Getting ornery on social media: What I’m doing in 2019, episode 2

Sunday night I blogged this:

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???” … it’s been two years since I had any new realizations.

Why would “figuring it out” make me stop blogging? Because as a change activist who’s also a public speaker, I’m gripped by one question: “What could be said that would make any difference?” There literally is no point in saying anything else. So once I realized how locked-in the system is, how intractable it is to change, I lost interest in flapping my gums and fingers.

But new things are in the wind, and it’s time to start pushing out those top learnings as foundation for what’s next. So, game on – in responses to two tweets, I got ornery:

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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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Book review: Augmented Health(care):
the end of the beginning, by Lucien Engelen

This book is so good I don’t know where to start. Just read it. (There’s an introductory 20% discount on the e-book below.)

Except – seriously – don’t read it if you demand a roadmap from here to the future. This is from the future. The image above, of a kid with a telescope, has been in the author’s office since I first met him, but until I was halfway through this book I didn’t understand why.

In Augmented Health(care) Dutch innovator Lucien Engelen of Radboud University Medical Center goes on a tour of the landscape that may strike the unfamiliar as manic or just plain nuts. Don’t trust that reaction – listen. He is unbound by the traditional view but absolutely bound to a future world where health – and care – are augmented such that things actually work.

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