e-Patient Dave

Power to the Patient!

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From theory to bedside: how paradigms affect practice

One of my best collaborators through the years has been editor Susan Carr. She “gets it” and always has, and she has the very special set of traits of a good editor-in-chief: she knows what her readers will value and she knows how to guide an article idea through the development process.

Both traits are essential help for an activist (like me) who wants to help people see things differently. To do that work, you can’t stand outside a conversation and throw rocks at it – you have to get inside and understand the conversation, see things as they do, and then point out from their perspective a new way of looking at things.

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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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BMJ Blog picks up the Taxonomy of Burden graphic

Taxonomy of Burden diagramFour weeks ago I posted about this excellent graphic that was published in 2015. Response on social media was nearly at a wildfire level, almost entirely from patients.

I pointed this out in the patient panel discussion group at the BMJ (formerly British Medical Journal), of which I’m a member, and proposed that it become a post on their blog. They accepted the idea, and today it got posted.

A large part of our work in participatory medicine is to build compassion and partnership between patients and clinicians, so I’m thrilled that they accepted a different angle on this post: Can a compelling graphic lead to better care plans? Here’s hoping, because when we better understand each other’s challenges, things can only improve.

bmj-blog-compelling-graphic-screen-caputre

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Ten years ago today: “Dave, there’s something in your lung”

Adapted from a slide I use in many speeches
Adapted from a slide I use in my keynotes

Some moments stick in your memory in vivid, multi-sensory recall. This blog post is dated ten years after such a moment.

Today I can still see the clock digits on my Sony desk phone when it rang at precisely 9:00 a.m. It was my primary care physician, Dr. Danny Sands. I’d had my annual physical on 12/29, and as a follow-up for a stiff shoulder, on January 2 I’d had an x-ray from one of the Boston Red Sox team physicians.

Patients around the world have told me they can relate to what happened when I answered the phone: what Dr. Sands said changed my life in an instant.

Dave, your shoulder’s going to be fine – it’s just a rotator cuff problem. But there’s something in your lung, and we need to find out what it is.

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