e-Patient Dave

Toward a New Science of Patient Engagement

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New essay in the Patient Experience Journal on “the paradigm of patient”

Essay in Patient Experience Journal's special issue on Patient InvolvementSeveral of you have commented that I started a series this spring on the evolution of my business and my advocacy over the past eight years, and then it stopped. Well, it hasn’t stopped, but the work itself has collided with the reporting about it.

I have a new essay, just published today, in Patient Experience Journal, which brings together a ton of interwoven issues I’ve been reading and thinking about: The paradigm of patient must evolve: Why a false sense of limited capacity can subvert all attempts at patient involvement.  It’s in that journal’s first Special Issue, devoted to patient involvement in producing healthcare.

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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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Taxonomy of Burden – potent visualization of patient experience of illness & treatment

Taxonomy of Burden diagram
Click to open downloadable high-resolution PDF in another window.

Response to this on social media has been very strong. Why? 

At conferences people are always asking how to comprehend what policy people call “patient experience.” Too often they think it’s things like “Was the food good? Did we smile for you? Was parking easy?” This diagram may help change that.

Have you ever been given instructions by a clinician that are really hard for you to follow? Have you ever thought to yourself, “Don’t they know I have a life? And I have to take care of my sick mother, too, and my car broke down, and…?”

And then for many of us there are all the complications of managing multiple conditions.

Lots of people talk about the burden of a disease, but what about the burden of treatment – when the treatment itself makes life more difficult? How ironic, when the whole point of care was to make life better?

I first heard about this issue from the Mayo Clinic’s Victor Montori when we both spoke last January at Maine Quality Counts.  (I blogged his slides and speech video: Careful and Kind Care for our Complex Patients.)

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How PatientSite handles interop (not). (Screencast demo)

My PatientSite labs screen capture
Screen shot of my lab data from the video below

I’m a health data nudist: I don’t care who sees my “privates,” if doing so furthers the cause. And the time has come to push the issue, because my hospital is stonewalling, and that is just so not okay: as comments on my previous post show, this truly impedes care. And that must stop.
To end any mysteries about the much-touted PatientSite portal, in all its 1990s glory, I’ve decided to publish a complete 15-minute walk-through of everything in my chart, when I’m logged in PatientSite at Beth Israel Deaconess, the hospital that magnificently saved my life ten years ago.

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Dear John: I still want to download my records! Gimme My DaM Data!

Let us start by reviewing our anthem: “Gimme My DaM Data – it’s all about me so it’s mine,” by the magnificent Ross Martin MD and his wife Kym, multi-cancer patient whose care has been affected by lack of access to her health data. “DaM” is Data About Me, Kym’s more-polite version of my cussing. Read on for why this is newly urgent.

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