e-Patient Dave

Toward a New Science of Patient Engagement

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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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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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“Patients are the most underused resource” – Warner Slack, 1933-2018

Teaching at Harvard Medical School, 2012 (Photo: Paul Levy)

A great, great man has passed away – a man I quote in half my speeches.  I was privileged to know him enough to feel grateful about it, and especially grateful to have been able to visit him a few times in his final weeks. It’s Warner Slack, the one who famously said in the 1970s that patients are the most underutilized resource in healthcare.

There’s so much to say about him, but I’ll mostly let others speak, partly because it’s hard to know what to add. Here are a few things.
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#2016ADA day 1: incredible interview with “artificial pancreas” creators Dana and Scott


If you can’t see the video above, click to watch it on Vimeo.

One of my favorite sayings about digital health is “When assets digitize, things change fast.” The point is that once information (or anything else, even fonts) goes digital it can suddenly be hundreds of times faster to develop new things. In health and care, a special kind of liberation becomes possible: if the person who has the problem can suddenly invent things, what becomes possible?

I’m at my first-ever diabetes convention, the American Diabetes Association’s 76th annual Scientific Sessions. I’ve written before about @DanaMLewis and husband @ScottLeibrand of OpenAPS.org, the open-source Open Artificial Pancreas System project. (Most recent was this on this site “When assets digitize, things change fast”: the #OpenAPS do-it-yourself pancreas and this amazing speech last month on e-patients.net.)

Did you know it’s not unusual for a basically health person with diabetes to die in their sleep? I never heard that until I got to know people in the DOC (diabetes online community). (Amazing what happens when you talk to the person who has the problem, eh?) That’s why I want awareness of what diabetes is, and awareness of this amazing project, to spread way beyond the usual diabetes community.

So early in this interview I ask Dana to briefly explain what the pancreas does, why it does it, and what goes wrong if it doesn’t work, which (I assure you) will lead you to understand why people with this disease might say “WeAreNotWaiting.” (If you don’t know that phrase, google it.)

Dana flashes her pocket pancreas while husband Scott grins
Dana flashes her pocket pancreas while husband Scott grins.

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Understand the Blockchain in Two Minutes: Institute For The Future

If this is the first time you’ve heard of blockchain, remember it.

If you’re like me, this will be puzzling and maybe a little bit unsettling, because people are saying it’s going to change the world, but it’s not at all clear what it even is, much less why it would change the world.

But I understand enough about it now to say (with reasonable(?) confidence) that they’re right, but it’ll be years before we all see it happening.

This is not specific to healthcare, but  it will surely show up in health information.

It’s called blockchain, and the Wikipedia article on it doesn’t help much. But that’s why I like the two minute video I found last week (above), from the Institute for the Future…. how? Why, via Twitter, of course – hat tip to @Sasanof (David Grayson) for his tweet! Please click to watch it. (Email subscribers, if you can’t see the video, click the headline to come online.)

Blockchain is as fundamental a change as HTTP and SMTP.

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“When assets digitize, things change fast”: the #OpenAPS do-it-yourself pancreas

Dana Lewis on stage at O'Reilly
Click image to watch video on the O’Reilly site

For some reason I’ve spoken about this a lot in speeches for more than a year but I haven’t blogged about it. The time has come.

One of my sayings in Let Patients Help is a lesson we learned in graphic arts, and the music industry learned too: “When assets digitize, things change fast.” This is, truly, an extraordinary example.

Some people with diabetes pretty much do as their doctors tell them and the industry tells them – they wait and hope that things will get better. That’s fine with me – I never say that people should be more like me. But when someone wants to take a more active role, I believe society (including medicine) should not stand in the way: let patients help improve healthcare.

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