e-Patient Dave

Power to the Patient!

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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.

 

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Let Patients Help – now available in Spanish: “¡Dejad que los pacientes ayuden!”

513d+SE7-hL._I’m thrilled to announce that my book Let Patients Help is now available for sale, in paperback or Kindle, in Spanish!

The project was managed by Luis Fernandez Luque (@LuisLuque), longtime member of the Society for Participatory Medicine and organizer of my tour of the northeast part of Spain two years ago. This man sees the future and makes things happen.

Please spread the word to the whole Spanish speaking world. ¡Dejad que los pacientes ayuden!

Thanks too to the other team members whose work made this possible:
Jaime Cubero Guerrero (Editor)
Miguel Tovar (Editor)
Elena Sainz (Editor)
Patrick Partridge (Translator)

 

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From Let Patients Help: “For patients: collaborating effectively with your clinicians” by Dr Danny Sands

In a Twitter chat this afternoon, friend Dr. Jack West noted that some e-patients are great to work with and others, not so much. It’s obvious we need to teach people how to do this effectively – both docs and patients alike … sort of a “patient engagement handbook.”

So I decided to publish this, from the “tip sheets” section of my book Let Patients Help: A Patient Engagement Handbook: :-) This part is written by my primary physician, e-patient pioneer Dr. Danny Sands.

Let Patients Help front cover

For patients: collaborating effectively
with your clinicians

By Dr. Danny Sands

  1. Appreciate that healthcare should be a collaboration among the patient, the patient’s caregivers and family, and clinicians.
  2. Be mutually respectful of each other’s contributions. Your physician is an expert in medicine, but you are an expert in you.
  3. Take responsibility for your health—healthcare is not a spectator sport: it’s participatory.
  4. Prepare for your visit: read about your conditions, review your record, make a list so you don’t forget, and discuss the agenda in advance. [Read more…]

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“Let Patients Help” gets two wonderful reviews

Let Patients Help front coverI got two wonderful surprises this week about Let Patients Help – unexpected, very favorable reviews of this little book.

The first was Tuesday on the Health Leaders web site. (They’re the magazine for medical management that in 2009 featured Dr. Sands and me in their cover story “Patient of the Future,” then included us in their “20 People Who Make Healthcare Better.”) In What the E in e-Patient Really Means, editor Scott Mace shows that he really gets it:

I’ve made a career out of documenting the empowering effects of technology. In the 1980s, among other things, personal computers were a way to engage students of all ages through the interactivity of educational software. In the 1990s, the Internet equipped us to get the most current data. In the 2000s, Web services enabled us to build “digital nervous systems” that automated the publication of that data, and our ability to subscribe to updates through the power of technologies such as RSS and search technologies such as Google.

But here in the 2010s, it’s ironic that the most personal of data we generate – that about our health – remains locked in healthcare’s vaults for a variety of reasons. …

It’s a long, perceptive essay – almost 10% as long as the book itself! The items he cites are truly the core of the message. Well done, Scott.

The second was today in Oncology Times – someone tweeted that they’d just seen it. (Why do I only learn of these things through Google Alerts and Twitter??) In the “Practice Matters” column, Lola Butcher writes Let Your Patients Help You.

Lola is informed and funny. Excerpts:

If you don’t know what [e-patient] is, click here and get with the 21st century. …

It only takes about an hour to read but if that seems like too much, skip to the “tip sheets” at the end. … Look for two sections — “Ten Things Clinicians Say That Encourage Patient Engagement” and “Ten Things Clinicians Say (or do) That Discourage Patient Engagement” — written by deBronkart’s primary care physician and co-author, Daniel Sands, MD.
I’ll just take issue with this closing item:
deBronkart has a big smile and a humorous way of making his points but physicians who do not support patient engagement should be very afraid of him.

Afraid of moi??  I wouldn’t say they should be afraid of me, but they sure will feel uncomfortable as the new reality unfolds. And that’s happening with or without me – I only talk about it, to spread the word and shed light on what’s possible.

Thanks to both Scott and Lola for drawing attention to this little book. Its tummy tickles every time someone says something nice.

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Extraordinary praise for Let Patients Help from a CEO

Let Patients Help front cover

Since Let Patients Help was officially released on April 15 there’s been lots of praise. The most exciting just arrived today: a hospital CEO who’s making the book’s ideas into something of a mission, starting now.

On her blog “Executive Rounds,” today Leslee Thompson posted “Let patients help” and other things I am learning. She’s CEO of Kingston General Hospital in Kingston, Ontario, where I spoke two weeks ago at their “KGH Connect” event. Please go read her post; these excerpts show how much she gets it:

One thing I do when looking at my calendar is to imagine what a patient in my hospital would think about how I am choosing to spend my time and energy. Would they approve of me sitting in my office reading reports about how to improve patient satisfaction? No. So I head on up to the wards and talk directly to patients and families.

[Read more…]