e-Patient Dave

Power to the Patient!

Search Results for: communities

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Spinal stenosis surgery? Request for e-patient resources.

Addition 4/26: Late in the comments, it turns out this was a wrong diagnosis, but the nature and quality of the discussion isn’t affected by that. Take a look at the issues that came up in my initial research and in the comments. Fascinating!

A friend writes:

Dear Dave,

A friend of mine has to decide if to do a spinal stenosis surgery.

Is there a solid resource to research if that’s a worthwhile option?

Any help, anyone?

Below is the result of a half hour of generic searching. I’d really like to supplement it with advice from other patients and clinicians.
__________

As generic starting info of the “Web 1.0” variety (“read-only” encyclopedias), here are the usual candidates: [Read more…]

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Time to practice what I preach: I have skin cancer again.

Photo of the lesion, Nov. 15
Photo of the lesion, Nov. 15 (click to enlarge, if you really want)

Update Feb. 11: I’ve decided to publish what I want to find in a provider: see this post.

Be sure too to read the substantial information contributed below in comments, some by e-patients and some by participatory providers. This process is interesting to observe!

An odd consequence of speaking at medical conferences is that sometimes my face is displayed, real big, on monitors at the front of a room. That happened in November at the Aligning Forces for Quality (AF4Q) annual meeting in Washington.

At the end, Lisa Letourneau MD, MPH of Maine Quality Counts raced up, pointed to my jaw, and said “You should have that checked.  I think it’s a basal cell.” (That’s the least serious type of skin cancer – see Wikipedia: “Basal-cell carcinoma (BCC) is the most common type of skin cancer. It rarely metastasizes or kills.”) A few days later I took the picture at left, and started watching.

I had a basal cell removed from my nose 30+ years ago. (More on this in a moment.)

To me it was just a shaving cut… but, I realized, it wouldn’t heal. For the next two months I was a slug (a not-engaged patient!), but I did take pictures, and son of a gun it did not get better, even when I thought it was finally going away.

When I had my annual physical recently, I asked my doctor, and he looked and said, “Get a biopsy.”  I did, this week, and today they called. Yup, it’s a basal cell. Thanks, Dr. L!

Remember how you’ve always heard that a warning sign is “a sore that won’t heal”? I guess they mean it. I kept kidding myself, thinking I was continuing to re-injure it shaving. (Not bright, I know.) Then, just before the physical, I ran across a summer photo, and there it was. So I guess it was there longer than I realized.

I’m going to blog this experience, as I try to practice what I preach: get engaged, learn what I can, explore my treatment options, connect with other patients.

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Ask the Patient feature, on QuantiaMD

QuantiaMD screen captureI was thrilled to be engaged by clinician network QuantiaMD to do an “Ask the Patient” feature. (I get a small stipend.) It’s live, and available for public viewing. Free registration is required to view their videos; you can preview the first minute or so of each one without registering.

We often talk (here and on e-patients.net) about patient social networks and how they help spread ideas and information. Well I’ll be darned, it turns out doctors and nurses are doin’ it too, with similar benefits. Who knew? :-) And you know I was thrilled that they’ve added a new feature, “Ask the Patient.” Here’s hoping every clinician community does the same. Let Patients Help!

It works like this:

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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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