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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We must democratize healthcare.

Revolutionary fist with words "liberate, empower, progress, transform, release, set free, break outTo achieve its potential, healthcare must be democratized.

I’ve reached this conclusion after hundreds of speaking events in eighteen countries over nine years. For me “speaking” has always involved a lot of listening and learning, and the more I’ve learned, the more I’ve puzzled over this paradox:

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Evolution 4: 2009 part 2 – a health I.T. “information trainwreck”

Screen capture from the Information Quality Trainwrecks blog’s post about what happened with my data. (I’m not making this up.)

Fourth in a series of retrospective posts, reviewing the ten years since my cancer and how my shifting perspective has altered what I’ll be doing from now on.

I’m generally doing one post per year, but so much happened in 2009 that it’ll take several. In particular, this episode in the spring of 2009 had such unexpected impact that I’ve had to think a lot about what to say. Sorry for the delay, but as you’ll see, this is an example of the important question that arose here.

In May 2008 my hospital had announced that their Google Health interface was live:

… a patient, with their consent and control, can upload their records to Google Health in a few keystrokes. There is no need to manually enter this health data into Google’s personal health record, unlike earlier PHRs from Dr. Koop, HealthCentral and Revolution Health. …

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Evolution part 3: February 2009 – the stage is set for an earthquake

Third in a series of retrospective posts, reviewing the ten years since my cancer and how my shifting perspective has altered what I’ll be doing from now on. I’m generally doing one post per year, but so much happened in 2009 that it’ll take several.

By the way, I added new items on my 2008 entry – things that later became important: an award I got for using data in my day job, and meeting @TedEytan. 

Forming the Society for Participatory Medicine

SPM handshake logoAt the annual “friends of Tom” retreat (Doc Tom’s friends) that I mentioned last time, that gang of crazies decided the time had come to become a medical society. In addition to deciding on a mission (patient-clinician partnerships) they talked about officers, and said “It won’t do to have this society run only by doctors, of course.” I think it was Gilles Frydman (founder of ACOR, where my patient community lived) who said it had to be a doctor-patient team. They looked around and pointed to the only pair in the room – Danny and me – and said we should be co-chairs.

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Evolution, year 2: 2008 – the e-patient movement and starting to speak

Last month I started a ten part series of retrospective posts, reviewing where I’ve been and how my perspective has significantly changed what I’ll be doing from now on. The first post, on 2007, was when I was diagnosed as nearly dead and got better; this is 2008.

I’d started my old blog at Thanksgiving 2007. Two months later, in January, my life took a sharp turn when I discovered e-patients. Here’s how the year unfolded.

January 24: Google Health

In hindsight this is amazing, but my tenth blog post ever was about the announcement of Google Health: What’s next, Google Health??  I said it’d be a cold day in hell when I’d trust Google with my health data. 13 months later that would change radically, which would change my life.

January 23-28: The e-Patient White Paper and “e-Patient Dave”

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I suppose that’s progress: “Patient-driven drug development is morally permissible”!

Screen capture of abstract "patient-driven drug development is morally permissible"This is one of those funny moments in a social movement. A few weeks ago the first email in my inbox was a Google Scholar notification saying that one of my BMJ articles had been cited in a new book, Philosophical Issues in Pharmaceutics. Yay!

The details, though, are amusing to an activist. The opening essay is titled Patient-Driven Drug Development, and in the abstract the author says “In this essay I argue that patient-driven drug development is morally permissible.”

At first I thought “How nice of them to say it’s morally permissible to listen to patient perspectives,” and I snarked about it on the BMJ Patient Advisor email group.  But then Amy Price PhD, a researcher/patient at Oxford, noted that this actually is real progress: it means people in industry are actively looking at questions like this, and things are starting to move forward.

So, hurray! It’s more significant than I thought. Here’s to progress, and here’s to more of it!