e-Patient Dave

Toward a New Science of Patient Engagement

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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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“Responsive design” as a metaphor for patient capacity (PatientCritical podcast)

I was recently interviewed by PJ Mierau, founder of the PatientCritical coop in Canada, for his podcast. PJ came up with a new metaphor for how patients handle varying amounts of information, when their abilities or their capacity (due to illness) may vary: it’s a Web principle called “responsive design.”  Below are some notes on that, and on patient co-ops. Here’s the episode, and here’s a rough outline:
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From Paternal Care to Autonomy and Emancipation (15 minute slidecast)

For the past several years a number of themes have repeatedly arisen in my work that aren’t widely discussed elsewhere, and I’ve wanted to make them available to wider audiences, so I’ve started recording occasional “slidecasts” – I play the slides on my computer and narrate. Here’s the latest. It’s a core topic in rethinking the patient-provider relationship: paternal caring, which is necessary in some situations, vs the increasing shift to patient empowerment, autonomy, and even emancipation – the removal of constraints.

I did this for my head & neck cancer patient friends in New Zealand, whom I met during my fellowship last fall. We’ve kept in touch on their Facebook group. On Thursday two of them, Maureen Jansen and Tammy von Keisenberg, are speaking about “health literacy” – a subject that’s misunderstood far too often, and which is often tied to discussions of whether patients should or can be independent to one extent or another. Food for thought.

Thanks once again to the sponsors and organizers of that fellowship: Spark Revera (New Zealand’s telecomms company, totally into the emerging world of e-health) especially @eHealthDoc Will Reedy MD, and Waitemata District Health Board, especially head & neck cancer surgeon David Grayson MD @Sasanof and its “i3” innovation center headed by Dr. Penny Andrew.

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Flaming dissent on the roles of patients – what’s morally right for us(!), part 1

I keep seeing patterns of thought that I frankly think are pretty benighted. With luck, shedding some light on them will help. This one is so STUCK in darkness that I’ve decided to publish a little series on the subject.

First is this editorial about patients in research. Next will be what happened when a researcher I know became a patient/family member. Then will be how this fits into a century-long timeline of progressing toward patient autonomy … which of course requires a matching increase in patient responsibility.

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