Patient and family engagement event August 8 in Concord NH

On Monday, August 8, my state’s Foundation for Healthy Communities (HealthyNH.com) is hosting an event where I’ll be speaking, titled “Improving Care at the Bedside through Effective Patient and Family Engagement.” It’s mostly intended for New Hampshire people, but organizer Tanya Lord says “I don’t think we would turn anyone away.”:-)

So come on down! Or up, or over, or whatever. Here’s a very short video introduction. (Email subscribers, if you can’t see the video, click the headline to come online.)
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Speaker Academy #28: “It’s my job to be more interesting than your email” (@TedEytan)

Phreesia webinar screen capture

Click to watch replay on Vimeo

This post is part brag, part teach, part challenge.

Last summer I did a webinar about patient engagement (here’s the replay) for Phreesia, a company that makes an iPad-like tablet that integrates a lot of steps to get you (the patient) into the provider’s computer system. Afterward, they said they “monitor the attention level of the attendees (it’s a GoToWebinar feature) … and it was the highest I’ve ever seen it.”

Really? GoToWebinar feature?  Yep, the system keeps track of how long attendees stay, whether they ask questions, and even whether they listen but stop watching by switching to another window while listening to the audio.

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Speaker Academy #27: Impact speakers! Get the “Official TED Guide” to speaking

TED Talks book cover

There’s only been one post in this series in the past year, but for impact speakers, this book is real news. Best advice on how to have an impact I’ve ever seen. Not perfect IMO, but full of things I bet you’ve never thought about that can really help you up your game.

By “impact speaker” I mean a speaker who really wants to grab the audience’s thinking and have an impact. That’s not the only valid kind of speaking, and it’s certainly not the only valid way to tell your patient story. But if you, like me, truly want to change the world, it’s really useful to get people’s attention. And this book makes clear that how you go about it can make a big difference.

It’s full of examples on big topics and details. And it does it so well that I’ve decided to:

  1. Blog about the book before I’ve finished it
  2. Buy the Kindle version as well as the audio version. (Kindle is infinitely better for note taking and excerpts.)
  3. Buy a copy for any Speaker Academy visitor (you) who can convince me they want it for good reason.

The author is Chris Anderson @chr1sa, founder of TED. When I first heard about the book I thought it might be some light fluffy cheerleading: “You can do it! Just be yourself!” Instead, it’s absolutely full of “This is what works,” “Do this; do NOT do that,” often including examples like “You might have done it this way:” followed by “But see how much better it is if it’s done this way?” Most points are accompanied by example TED Talks you can watch, and in the Kindle version those talks are even linked.

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Gin-knee-versary! A year since my wife got her unbelievable new knees from @HJLuks

Ginny at Half Moon restaurantThis is a verbatim copy of an extraordinary blog post last year, which I updated several times.

It was a year ago today that orthopedist Howard Luks @HJLuks replaced both my wife Ginny’s knees in one day, and as you’ll read, his method is so incredible that not only did she get no transfusions, her bandage didn’t even need to be changed until the follow-up visit weeks later. And as you’ll see, the progress of her recovery was extraordinary.

Want new knees? Read how Howard does it. Know anyone who’s considering new knees? Share this with them, please! I even gave it a memorable URL: bit.ly/ginnyknee


July 7, 2015

On Facebook Friday I posted this picture of my wife Ginny, saying “There is an astounding story behind this photo. Details Monday.” Well, it’s Monday.

As you read this, bear in mind, your mileage may vary – everyone’s different, this wouldn’t be appropriate for everyone, and Ginny herself played a big part in it.

The astounding story:

In this photo we were out to dinner, nine days after Ginny had both knees replaced. She walked into the restaurant using only canes – no walker, no wheelchair. The surgeon is Howard Luks, the social media orthopedist (@HJLuks), whom I met on Twitter in 2009, and the surgical approach he used is called muscle-sparing (or “quad-sparing”) minimally invasive surgery, part of a larger package of methods he uses, described below. Bottom line:

  • None of her muscles were cut
  • She had no transfusions
  • She has not needed to have any of her dressings changed
  • She left the hospital on day 3, was discharged from rehab 8 days after surgery, and today on day 12 we’re returning to New Hampshire, to continue outpatient physical therapy from home.

Of course she’s still on pain meds, tapering down, and her endurance is of course limited. But she is basically functional and able to live on her own if she needed to, or rehab wouldn’t have discharged her.

Here’s a video of her walking around the hospital floor – 500’ – with a walker for balance (not leaning on it), less than 48 hours after leaving the O.R., and on the right, at rehab, walking with just canes, a week after the surgery:

She was discharged from rehab after demonstrating (among other things) that she can safely walk up and down a full flight of stairs … six days after the surgery. She can get herself into and out of bed, into and out of our Prius, etc. She’s not speedy at any of it but she’s functioning reliably.

(Of course I have Ginny’s permission to talk about all this. Also, I’m an e-tool geek and she’s not, so I’m the one using the tools discussed here.)

Again, everyone, please read this: your mileage may vary – everyone’s different, this wouldn’t be appropriate for everyone, and Ginny herself played a big part in it.

The part Ginny played, as an activated, engaged patient

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Geneva, Monday June 27: evening keynote open to the public!

Click to visit press release page

Click to visit press release page

Next Monday, June 27, I’ll be doing something really fun: an evening keynote at a medical conference in Geneva, Switzerland, open to the public. If you know anyone who can get there, please invite them! It’s just 20 Swiss francs (about US$21), and simultaneous translation will be offered.

The conference is NI2016 (Nursing Informatics 2016), whose theme this year is “eHealth For All.” My talk is from 6:20 to 7:20 pm, followed at 8 by a fashion show featuring wearable technology.

The conference will provide simultaneous translation into German and French, and a delegation from China will have its own simultaneous translator.

I’ll take a moment here to mention four international editions of my signature book Let Patients Help, because of the international nature of this event – and because three translators will be present:

French, German and Chinese editions
(and Spanish)

Let Patients Help is available in eight languages, a real sign that participatory medicine is not just an American thing – it’s becoming a global movement. In addition to English, four languages are relevant to this event:

  • Christine Bienvenu

    Christine Bienvenu

    French: Impliquons les Patients!
    Christine Bienvenu (right), translator of the French Kindle edition, would love to find a publisher or sponsor for a print edition. Come meet her!

  • German: Lasst Patienten mithelfen! is Part 1 of the German e-patient textbook Gesundheit 2.0.
  • Chinese: 请患者参与 (available only in China … this may be of interest to the Chinese delegation)
  • Spanish: ¡Dejad que los pacientes ayuden! I mention this because its translators, Elia Gabarron and Luis Fernandez Luque, will also be present.

Again, if you know anyone in the area, please do invite them. Thanks!

 

Perceptive new work on diabetes stigma. Well done!

Diabetes misconception slideI haven’t had occasion to talk much about it yet, but in November 2014 Dr. Danny Sands said routine blood work showed my hemoglobin A1C was slightly elevated. That’s what they call “pre-diabetic,” so woohoo, I get the privilege(?!) of pivoting from the cancer world to learn about diabetes in its many forms.

Man, it’s complicated – I did everything right, lost 40 pounds, became a runner, and my A1C went up! That’s how it goes sometimes, according to my friends in “the DOC” – the “diabetes online community.” Managing diabetes is complex – lots of work to do every single day. That’s one reason I’ve always said a healthy PWD (person with diabetes) is the archetypical e-patient (engaged patient).

I’m at a diabetes conference (more on that below), and last night I saw what may be the most perceptive, smart, patient-centered presentation I’ve ever seen. Ever seen. Anywhere.

I’m new to this field, so maybe this kind of thinking is commonplace here, but not from what I’ve seen. Lots to say about it, but for today here’s a starter post.

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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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“Think, think, think”: message to European Cancer Patients Coalition AGM

View mHealth presentation to ECPC Annual General Meeting on Vimeo.

ecpc logoThis is a quick first post to get this online before the meeting finishes. I hope to add more notes below.

I’m in Brussels at the AGM (Annual General Meeting) of the European Cancer Patients Coalition, an association of over 400 cancer patient organizations. They are organized, they’re methodical, they’re action-oriented, working on health policy, drug development processes, patient involvement in clinical trials, and anything else in the patient’s interest. I was invited by Mrs. Kathi Apostilidis, vice president of ECPC and a long-time member of the Society for Participatory Medicine. She is also known as a force of nature.

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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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