e-Patient Dave

Toward a New Science of Patient Engagement

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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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Larry Weed, 1975: “The patient must have a copy of his own record”

This week I’ve had two new blog posts published on other blogs. This one’s close to my heart.

Dr. Larry Weed, who died in June, was a legendary physician, way way WAY ahead of his time in his vision for computers in healthcare, but also for his clear vision that if it’s your health, you need to be actively involved in managing it. AthenaHealth, a medical records system vendor, commissioned me to write a post about him, and it went live yesterday.

I had found a copy of his amazing 1975 book Your Health Care and How To Manage It, and found some astounding things in it. Please go read the post and see the quotes.

Bringing method to medical practice

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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!

 

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Berci’s “My Health: Upgraded”: A futurist vision worthy of Doc Tom

Berci holding "My Health: Upgraded"

The headline above is an extraordinary statement, but after 450 speeches and policy meetings, I’ve heard a lot of discussions about healthcare (especially its future), a lot of predictions, and a lot of attempts to explain the past, and the new book My Health: Upgraded (Amazon) stands out as the best explanation of the future that I’ve seen.

I myself never met “Doc Tom” Ferguson, the founder of the e-patient movement, but I’ve looked back at the vision he published and how it’s come true – and I’ve thought about why, a lot. This new book by 30 year old Bertalan “Berci” Meskó MD, PhD is in the same league. (Disclaimer: having never met Tom, I’m talking about the vision as he expressed it in his writings, which is all I have to go on.)

Happily, the BMJ (formerly British Medical Journal) liked the following review well enough that they published it on the BMJ blog. Below is that text, slightly modified.

“My Health: Upgraded”
is a clear vision from
a young futurist

In my work to understand how medicine saved me from Stage IV renal cell carcinoma in 2007, yet so often falls catastrophically short, I’ve looked for causes of both success and shortfall. More than anything, I’ve seen that “the progress of progress” depends on whether we correctly see, or fail to see, the latest and most important new patterns that alter what’s possible and what direction we should head in.
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Coming to Switzerland. Add an event?

Swiss flag
Source: Wikipedia

Special invitation to Swiss readers! This is an opportunity to book an event this June at a greatly reduced price compared to my usual rates. Because it’s Switzerland. :)

Early in 2011 two extraordinary invitations arrived. The first was to speak at TEDx Maastricht, hosted by my now-good-friend Lucien Engelen at RUMC. It was an amazing TEDx, mostly about patients, with most speakers being what I now call “actual sick people.” Lucien gets it, and the experience was mind-blowing (and changed my life).

German cover from AmazonThe other was from a couple with a consulting business called IKF, in Lucerne, Switzerland. They completely see the e-patient future, and every spring since then they’ve invited my wife Ginny and me to come back. We don’t make much money on it, because they got me when this was all brand new, and c’mon, it’s Switzerland, and  the scenery is just unbelievable… I teach a half day session in the e-health course they teach at the university, and they organize a few speeches in the area at greatly reduced prices, for any sponsor. That covers the costs with a little left over.

Because they were sponsors way back in the beginning, in my price policy they qualify for the “BFF” discount, which we extend to everyone who books something as part of this annual trip. They were also the ones who told me I had to write Let Patients Help … so they could translate it into German for use in a textbook!  So I wrote it and they translated it. (I’m not kidding – this is the kind of change-oriented visionary I love to do business with. Wouldn’t you??)

(They also had Lucien write a section – no coincidence there!)

This year’s trip is June 7-13. If you’d like to sponsor an event – a speech, a private consultation, whatever – please contact andrea.belliger at ikf.ch who is coordinating.

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“Balancing Diabetes” by @SixUntilMe

Balancing Diabetes cover

Kerri website photo
Kerri’s photo on her blog

I’m going to do something really rare: I’m going to endorse a book I’ve barely started reading. It’s Balancing Diabetes: Conversations about finding happiness and living well, by the famous diabetes blogger Kerri Sparling, aka @SixUntilMe. (She was six until she was diagnosed and became the “me” she is today.)

This endorsement is rare because I’ve always said I can’t endorse something I haven’t consumed. (Did you know that most book blurbs are written by people who haven’t read the book?) But this situation is out of the ordinary:

  • Last week at the SuperPatients event in Providence, I witnessed what a powerful speaker Kerri is. She owned that room for her 20 minutes – like a good TED Talk. And she wasn’t just a capable speaker – she created the world of living with diabetes. As much as I’d heard about diabetes through the years, I had never gotten the world of living with it. To create that in minutes takes extraordinary skill.
  • She signed my copy of her book, and last weekend I started reading it. Bingo, in the first pages it was clear that this is the same voice. (I should have known, because her blog is just as direct and powerful, but so often books come out different. This one works.)

So I’m endorsing. Buy it if you want to understand life with diabetes, or if you want a great read about how different a patient’s point of view is, compared to what we read about the disease per se.

I also love that Kerri has woven this disease into her life, and though she doesn’t love the disease, she loves her life. That’s important, because the book is about balancing, about having a life you love.

See, that’s patient centered care: looking at care from the patient’s perspective, separate from what the lab tests say.

p.s. I first learned of Kerri years ago when she blogged about her pregnancy. Why’s that remarkable? Because when she was diagnosed as a child she was told she shouldn’t have children. Well, as fans of her Facebook page know, today she has one of the most remarkable, amazing four year olds in the world. The child’s nickname is Birdie… check the cover.