e-Patient Dave

Toward a New Science of Patient Engagement

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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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“Think, think, think”: message to European Cancer Patients Coalition AGM

View mHealth presentation to ECPC Annual General Meeting on Vimeo.

ecpc logoThis is a quick first post to get this online before the meeting finishes. I hope to add more notes below.

I’m in Brussels at the AGM (Annual General Meeting) of the European Cancer Patients Coalition, an association of over 400 cancer patient organizations. They are organized, they’re methodical, they’re action-oriented, working on health policy, drug development processes, patient involvement in clinical trials, and anything else in the patient’s interest. I was invited by Mrs. Kathi Apostilidis, vice president of ECPC and a long-time member of the Society for Participatory Medicine. She is also known as a force of nature.

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“The Patient’s Perspective – medicine’s new true north” – essay in PLAID diabetes journal

PLAID Journal coverFor the past year I’ve mentioned this in speeches, but I’ve never written about it here:

In November 2014, a routine blood test revealed that my hemoglobin A1C was slightly elevated, making me what they call “pre-diabetic.” (See lab results below.)

Well, that got my attention.

Why? Because, through social media, I know a lot of really smart, articulate, passionate members of “the DOC” – the diabetes online
community – and I’ve learned all kinds of things about the reality of diabetes that you don’t see in the TV commercials.A1c screen capture

I’ve learned that it’s not rare for a basically “healthy” person with diabetes (PWD) to die in their sleep when their blood sugar crashes; I’ve learned about unfixable nerve pain and amputations; I’ve learned about all kinds of things that can go wrong when diabetes gets out of control. I don’t even know enough to make a properly prioritized list, but I know enough to say you do not want to have diabetes if you can avoid it.

(Footnote: it drives many of us nuts when a TV commercial or news story talks about “diabetes” as if it were one thing. It’s not. Type 1 diabetes (T1D) is medically different from type 2 diabetes (T2D), which I am at risk for; it typically arises in middle age, but has been seen as young as age 3. “Diabetes prevention” is an ignorant thing to say: Type 1 can’t be prevented, Type 2 sometimes can. But that’s a rant for another day.)

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“I’m gonna live live live until I die”: new speech about palliative care at #cccc16

e-Patient Dave CCCC title slideI spoke Thursday to a completely new kind of audience: the Coalition for Compassionate Care of California, which is involved in palliative care.

Palliative care is not a synonym for hospice or end of life. It’s about making life with a disease more comfortable, which can be combined with curative care – it does not mean you’ve abandoned hope of a cure. But many doctors, nurses and insurance companies don’t know this yet. Be informed, and speak up! 

Although it was a new topic, the talk was a tremendous success. Here’s the video, which was captured (at no cost!) by @KSAust (Kris Austin) on Twitter using Periscope. (Email subscribers, if you can’t see the video, click the headline to come online.)

It’s about changing our cultural conversation

I compose every talk for the individual audience. There’s often a lot of overlap with previous talks, but this one was very different: I’ve never talked about this subject. It ended with an enthusiastic standing ovation, which always means the message got through.

Thanks to my barbershop singing hobby, especially my chorus, the Nashua Granite Statesmen, from whom I first heard this arrangement of the song that was the title of this talk: “I’m gonna live until I die.” At the start I pointed out that Frank Sinatra introduced this song the year I was born (1950), and at the end I said that we pass our culture down to the next generation: the talk ended with a performance of the song by one of the Harmony Explosion summer choruses, where we barbershoppers pass the tradition along to the next generation.

Seriously, spread the word, because hardly anyone knows: Palliative treatment can be combined with curative ones. It’s not a synonym for hospice, and does not mean giving up hope – it means making it easier to cope with the effects of a disease or its treatment.

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An examined life in an unfolding movement

Yesterday I wrote about a mistake I made last year at Medicine X, behaving unfairly to a volunteer while over-tired. At the end I said “I believe in introspection – ‘the examined life,’ as they say – and continuous self-improvement,” and that I’d be saying more about what I’ve learned.

In potentially troubling times, what makes a difference is what you’re committed to, because that’s where your compass points even when things get bumpy. My goal in this essay is to close out the episode having learned something. Here’s what I see.

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