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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    e-Patient Resources for Parkinson’s Disease

    I’ll add this to my list of patient communities. This is an important project – we need to build, somewhere, a publicly available community list that patients everywhere around the world can access. Some sites on my community page are starting, but we have a long way to go.

    Here’s an example of why – a true story from tonight’s email.

    Tonight a friend emailed me, grumbling about the utterly useless responses a relative had received, trying to find out the latest thinking about the beneficial effects of bicycling for Parkinson’s patients. He’d even contacted one of the biggest-name hospital/clinics in the world, intentionally doing the e-patient “best practice” of seeking the best authority, and had only gotten links to useless news clips:

    This is really interesting (snarl). My brother has what I would call early PD. A bad and recalcitrant tremor is his main problem.  He is a lifelong athlete – marathons and triathlons. He is HIGHLY self educated in the research on PD. His question is:  is the ‘forced’ aspect of the bike pedaling a critical factor in achieving the result? The reason is that 90 rpm is not ‘forced’ for him – it’s easy. But faster than 90 rpm and he bounces off the seat.

    He has not been able to get an answer even from researchers. There may not be one yet, but here is Cleveland Clinic’s disappointing response – send him 2 news videos with utterly superficial treatment of the subject!!
    Blew my mind. We have a long way to go, Dave.

    ———- Forwarded message ———-
    From:
    Date:
    Subject: Biking PD study
    To:

    I asked the Cleveland Clinic if the pedaling had to be “forced” to have benefits. I got a canned response to look at these two videos. I did not find the answer after viewing them–did I miss something? Looks like immediate results that remain for days/weeks. Wadda ya think?

    http://www.msnbc.msn.com/id/3032619/vp/26510952#26510952
    ABC Good Morning America story with Dr. Jay Alberts

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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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