e-Patient Dave

Toward a New Science of Patient Engagement

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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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A MOOC about social media in healthcare: opportunities & challenges

FutureLearn Social Media in Healthcare course screen captureThis post is about a specific course, the concept behind its technology, and what it means for the future of learning. For people who know about MOOCs this will be old news; for people who don’t, I hope this will be enlightening. It’s a big change.

For years I’ve heard about MOOCs – Massive Open Online Courses. As Wikipedia says, “…an online course aimed at unlimited participation and open access via the web.” I first wrote about the idea three weeks ago, in Reusable building blocks: a speech by video Q&A, but I’d never touched a MOOC, until recent months when I got involved with one.

It’s a free course (that’s the “open” part) that ended last month, and will start again in two weeks: Social Media in Healthcare. Specifics:
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“Knowledge is Power. Power to the people.” (Guest post for Philips Healthcare)

For healthcare to achieve its best,
empower the patient and family.

Here’s a composite of four quote graphics Philips tweeted yesterday for World Cancer Day:

Memes Philips tweeted with links to the post

I’ve had the good fortune to cross paths with Philips Healthcare several times, most recently for a speech (video) at the big RSNA radiology convention in Chicago. I just love what they’re doing in partnership with REshape and Innovation Center at Radboud UMC, where my crazy-amazing friend Lucien Engelen is rapidly creating the future of health and care with Philips and Salesforce.com. Seriously: watch what will come out of that threesome!

So when Philips asked me to do a guest post for yesterday’s global #WorldCancerDay, I said sure. It ran on their blog yesterday.

“Knowledge is Power. Power to the people.”

For healthcare to achieve its best, empower the patient and family.

When social change meets innovation, new things become possible. That’s what’s happening in the patient world, as “participatory medicine” is empowered by patient access to all kinds of useful information.

When the Web was born the term e-patient was coined by “Doc Tom” Ferguson to describe a new kind of patient, no longer in the dark but thoroughly empowered to achieve new things – because they have unprecedented access to information. The idea has matured and deepened, and now, ten years after Ferguson’s death, is coming of age with the signature catch-phrase ‘empowered, engaged, equipped, enabled’.

It’s a moment we should celebrate, because for too long medicine has edged away from the changing landscape of consumer power. Every industry from music to travel to supermarkets has gone digital, sharing knowledge and power and flexibility with their consumers, but medicine has lagged behind: many are not on board, and it’s holding healthcare back.

This is serious stuff: the information revolution has touched my medical life more than once – sometimes in life-saving ways:

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The arriving future of tech in health(care): Lucien Engelen on LinkedIn

@Reshape's Twitter avatar
Radboud @REshape’s Twitter avatar

This is going to be a fascinating year, with a mix of social and technological change. On Saturday I started the year with The future of caring: careful, kind, “minimally disruptive.” Today I’ll flip to a completely separate channel: how technology is changing what’s possible.

Lucien Engelen head shotLucien Engelen, about whom I’ve often written, is the manically productive visionary at Radboud UMC, the Dutch medical center that sponsored my TED Talk in 2011. In particular, he’s head of their REshape Innovation Center … it’s fitting that @REshape’s Twitter avatar is a kid with a spyglass looking to the far horizon … far, but visible.

A post you should read:

Lucien’s just written a post on LinkedIn with his vision of what’s on the horizon and what is changing, now, already. It’s a short post but it’s a dense learning experience, with dozens of relevant links and a half hour of embedded YouTubes. Lucien’s view of the horizon is (a) different from most observers’, and (b) firmly grounded in what REshape is already doing, so this is not a distant pontificator’s view, it’s from the trenches, feet on the ground. With spyglass.
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