e-Patient Dave

Power to the Patient!

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Crowdsource my keynote! “Gimme My Damn Data, three years on”

Three years ago this month, at the Medicine 2.0 Congress in Toronto (photo at right), I gave my first keynote: “Gimme My Damn Data.” As I detailed recently, it was the beginning of a movement. And now, this weekend at the same event (at Harvard Medical School), I’ve been invited to give the closing keynote:

“Gimme My Damn Data, Three Years On: What’s Changed, What Hasn’t, and What Still Needs To.”

I have my own thoughts, but I’m sure you do too. What do you think? One big thing that’s changed is that this is a movement with many voices – I’d love to include yours. Leave a suggestion in a comment here, and if I use it, I’ll credit you!

For starters on What’s Changed:

  • ARRA / HITECH: The US stimulus bill, with its billions for adoption of health IT, has rolled out and is causing change.
  • Meaningful Use: in the US, we now have regulations that are tugging
  • The OpenNotes project has completed; its results will be announced next month. (A massive study to document what does and doesn’t happen if patients get access to their doctors’ actual visit notes.)

Starter on What Hasn’t and What Still Needs To:

  • It’s not a reality yet. Many providers still resist.
  • You and I don’t legally own our data. If we did, they couldn’t keep it from us.
  • Most of us don’t have good patient portals
  • It’s practically impossible  to pull together data from all sources into a single record.

What else??  I know there are tons more – help me!

Background information

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Experiences exploring BCC patient communities, part 1

On my first post about my BCC (basal cell carcinoma), seeking patient communities and other information, I was pleased that people submitted four communities.  I posted them to my very informal patient communities page:

Tonight (Feb 20) I’m exploring them for the first time.  I didn’t find any useful information yet, so you may want to come back another day.:)

  • If you know of other communities, please submit the URL in a comment below.

This won’t be of interest to most people – it’s mostly for people who want to study what a site should be, and the process of exploring.

Preface – my purpose and context

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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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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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