e-Patient Dave

Power to the Patient!

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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!

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Evolution, year 1: 2007 – cancer & recovery

First in a series of posts about the ten years since my diagnosis.

In 2007 I felt like my life was cornered into “Game Over.” Instead, it said “Free replay!”

Earlier this month on Twitter, health futurist @Berci asked which books I’ve read recently. It reminded me that for the past several years I’ve wanted to blog about how my views have changed as I’ve learned more about healthcare, which saved my life yet which has so many extraordinary malfunctions and disconnects, even as it accomplishes more and more apparent miracles. Even disconnects and malfunctions among very smart and conscientious people.

As I dug out the facts for this retrospective – my Amazon buying history (in print and audio and Kindle) and reviewed my travels (1.1 million miles to 500+ events) I thought wow, this has been an amazing trip, with some significant turns along the way. So I’ve decided to blog the odyssey and evolution year by year.

In this post, for 2007, there’s not much blogging, and no speeches, but a lot of terror, facing mortality, redemption and joy.

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