e-Patient Dave

Power to the Patient!

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Patient Engagement Links for Military Health System Conference

MHS conference Banner 2012

I’m speaking this morning at the Military Health System conference in Washington. It’s a high-speed panel, with 12 minutes per speaker, so I’m posting here the links to the sites and resources I’ll talk about. (This saves people from scribbling URLs or the frustration of not remembering later … just like getting information in the doctor’s office, eh? Sometimes the Web is useful!)

At bottom is “Let Patients Help” – my 16 minute TEDx talk from Maastricht, in the Netherlands, covering e-patient founder “Doc Tom” Ferguson on self-care, three e-patient stories, and “the e-Patient Rap.” But first, here are the links:

  • Society for Participatory Medicine, its journal, and its blog e-patients.net
  • ACOR community – great example of a patient community
  • Medical Self-Care (1985 article about Ferguson)
  • Open Notes project by the RWJ Foundation
  • e-Patients White Paper – check the Seven Preliminary Conclusions – in  Chapter 2
  • Visible Body – to understand anatomy

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    Links from the e-Patient Boot Camp

    The last ones still here for the belated class photo: host Shwen of Edelman, @TiffanyAndLupis, Siet, Jay @J_Nagy, Christine @bydls, @ePatientDave, Allison @AMBlass, and Jeff

    This page contains links to content discussed in the e-Patient Boot Camp today.

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    Clinician focus group for e-Patient Boot Camp

    The P2 Collaborative of Western New York is one of the communities of the Robert Wood Johnson “Aligning Forces for Quality” project. (I just realized I’ve never written about this excellent project! Must fix. They’re smart, methodical, data-driven and effective. There are 16 communities in the Aligning Forces project, and P2 is one.)

    The P2 people are just brilliant – they’ve taken my e-Patient Boot Camp idea, intended for industry, and are breaking it down into packages for consumer/patients and for clinicians. Here are some links from today’s session with clinicians:

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    Let Patients Help, Cost-Cutting Edition, part 2: Shingles vaccine

    Corrections added Jan 10 as noted. See sections marked “Update 1/10”. See also my comment tonight on today’s disgusting experience of trying to sort this out, and our ultimate rescue.

    Two months ago I posted Let Patients Help, Cost-Cutting Edition, part 1: a bill:

    I often hear about how patients are a major part of the cost problem – their “non-compliance,” their wanting everything they can get, wanting it for free, etc.  So, let’s see what happens when a patient who wants to help cut costs gives it a try. …

    In that case I tried to fathom a so-called “Explanation” of Benefits, which was in fact unfathomable. (The FTC forced cigarette makers to be truthful in labeling; can’t they force insurers to stop using “explanation” on something nobody understands?)

    This time my wife and I are shopping for vaccines. Specifically, shingles. And trying to be a responsible consumer turned out not to be easy.

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    I’m singing again – for the first time in years!

    In the past couple of years I’ve gotten used to being on stage, but this July I’ll be doing it in a different way: for the first time in three years, I’ll be on stage singing, with my buddies in a choral competition: the World Choir Games, in Cincinnati.

    So tonight, for the first time in three years, I stood on the risers and sang.

    Longtime readers know singing used to be a big part of my life. I sang in school and college, and ten years ago I joined the Nashua Granite Statesmen, a men’s barbershop chorus. (Lots of people have heard of barbershop quartets, but not many know we do it in choruses too!)

    For years they (we!) were the perennial New England champion and would go to international competitions. I’m no soloist but because of this great group I got to compete at internationals in Montreal, Indianapolis and Nashville.

    At my diagnosis, five years ago this month, I asked Dr. Sands if I should stop singing to conserve energy, and he told me no – it’s not good to drop life activities that you love. (It seems I’d, um, talked about it a bit…)

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    “There’s something in your lung”: five years ago today

    This is a re-post with new URL – for some reason the original of this post failed.

    Precisely at 9:00 a.m., five years ago today, the phone rang and my life changed.

    Snapshot of pre-visit notes (click for PDF)There were two calls, actually, from two physicians. I don’t recall which was first, but one was Dr. Danny Sands (my primary), and the other was orthopedist Dr. Jeffrey Zilberfarb.  Five days earlier I’d seen Dr. Sands for a physical; in my pre-visit agenda email (PDF at right), I’d noted “Shoulder: range of motion complaint,” and that as we’d discussed earlier, I had made an appointment to see Dr. Z on January 2. That visit had been cordial, unremarkable; he’d x-rayed my shoulder.

    But in the x-ray Dr. Zilberfarb saw something unexpected, and he’d contacted Dr. Sands. Dr. Sands called me and said, “… I pulled up the x-ray on my screen. Your shoulder will be fine – it’s just a rotator cuff problem. But Dave – there’s something in your lung.” (See lower image.)

    He said we didn’t know what it was – could be a fungal thing, could be a scar left over from some old infection – but “we need to find out.” I said, “So, you need me to get back in there?” He said yes.

    Imagine hearing “There’s something in your lung” when you don’t feel sick – something significant enough that your doctor calls you at 9 a.m. You immediately start thinking about that spot, looking for any sensation, any sign of trouble. You start wondering, “Do I have a time bomb inside me??” And that’s not a nice feeling to have, when your doctor’s on the phone.

    He said he’d called radiology and ordered a CT. In parting I asked, “In the meantime, is there anything I can do?” And Dr. Sands replied: “…Just go home and have a glass of wine with your wife.”

    And that is a sobering thing to hear from your physician.
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