e-Patient Dave

Power to the Patient!

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Getting your health data: BlueButton/ShareCare tweetchat Thursday

A press release published Tuesday begins:

Sharecare and Blue Button Host Twitter Chat to Help Consumers Take Control of Their Personal Health Information

Gaining control of your health and your personal health information is more than just a convenience – it’s your legal right. But most people don’t know where to start. In an effort to educate the American public about how they can access their health records easily and securely, Sharecare, the online health and wellness engagement platform created by Dr. Oz and WebMD founder Jeff Arnold, is hosting a Twitter chat on Thursday, June 5 at 12pm ET. …

Sharecare tweetchat site screen captureIn February I posted video of a talk I gave last summer in New York at the Blue Button Developer Conference, passionately appealing to developers to join in to achieve what US Chief Technology Officer Todd Park has for years been calling “Data liberación” – setting data free so that we, the citizens, can benefit from it. When Todd first said it he was talking about data in government “data warehouses”; Blue Button is different: it’s about our data – mine, yours, your family’s – as individuals. Now, to promote citizen awareness of this new and evolving method of getting our data, Sharecare is hosting this Twitter chat on Thursday. See the event’s web page for more information. Astute readers will notice that I’m among the listed experts. I’ll be live in the third hour, 2-3 pm ET Thursday, when the topic will be “what’s the future of health and healthcare supported by Blue Button?” Boy do I have thoughts on that. (As a result, I now have an expert page on Sharecare.com.) And of course as with everything on Twitter, the archive will be available afterward.

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“Patients + Providers + Technology = Engagement” (Guest post by Patti Brennan)

Patti Brennan
Patricia Flatley Brennan, PhD, RN, PhD – University of Wisconsin Madison, School of Engineering

This is a real pleasure – a guest post by Patti Brennan (@PattiFBrennan), one of the people I admire most in the world of improving healthcare through patient engagement. I first met her through Project HealthDesign, one of the best programs sponsored by the Robert Wood Johnson Foundation: “Rethinking the Power and Potential of Personal Health Records.” I’ve also shared a panel or two with her at industry events – not nearly enough to suit me, though. :-)

Last year Project HealthDesign completed. One of its key subject areas was “ODLs” – observations of daily living. Here she explains the idea and lists some exemplary work she’s seen.

This guest post (I added some boldfacing) is long overdue – I’m just too busy for my own good sometimes! Thanks for this honor, Patti.

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Patients + Providers + Technology = Engagement

There’s a growing group of patient advocates, people like Hugo Campos or ‘our own’ Dave deBronkart (e-Patient Dave), who are calling for patients to be active and equal partners in their health—and that’s a goal that as a nurse I wholeheartedly support. At Project HealthDesign, we have worked to encourage two-way conversations between patients and clinicians, with both parties held in equal status. Clinicians are the trained experts in health care, but patients are the experts in their own lives and their own bodies. We believe that when both parties work together, more can be done to improve health care than either can do alone.

The key to forging these relationships and creating successful partnerships between patients and providers is technology.

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Do you know what’s in YOUR (health) wallet??

VeHU audience poll question resultsI’m at the gigantic HIMSS health IT conference in Orlando, in the consumer pre-conference. In my opening talk I briefly mentioned something I’ve said for years:

Have you looked in your chart? Your medical record? Do you know for a fact that there are no errors in it?

Most audiences appear intrigued and thoughtful at this. But ha ha ha, at HIMSS (people who work in health IT), on Twitter there are two interesting reactions:

  • Several different people tweeted it, showing unusual interest in it, and more than a dozen retweeted those
  • And, a whole bunch of people are saying “Who says?? What’s the source??” 

How fascinating. Well, here’s what I know about it.

  • 18 months ago I spoke at the Veterans eHealth University, a virtual university for people who work in the VA (veterans’ administration) health system. They asked me to submit some interactive audience response questions.
  • One was to ask the audience if they had checked their own record. The results are in the slide above. (Sorry about the typos – that’s how the A/V guys typed it into the computer.) Results:
    • 50 / 66 (76%) said no, they’d never looked. (Have you?)
    • Of the 16 who had looked:
      • 5 (31%) weren’t sure whether there were errors.
      • Of the 11 who were sure:
        • 7 found mistakes (64%)
        • 4 found the record was perfect (36%)

So, roughly: of those who had checked, about 2/3 found mistakes: missing allergies, wrong medications, wrong diagnoses, etc.

Since then, depending on the audience, I’ve asked this of other audiences. Every time of those who’ve checked, about 2/3 found errors. Every time.

This is not a peer reviewed journal article.  I’d love to see one! I also encourage all health IT speakers to ask their own audiences. Maybe mine aren’t typical, somehow.

And by the way – if you’re skeptical, do you know if your record contains everything doctors and nurses should know about you, and doesn’t contain errors?

As always, discussion is welcome!

It’s like the old Capital One commercials – do you know “What’s in your wallet?”

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Updates added later:

  • At the British Columbia Patient Safety & Quality Council conference later that week, in a post-keynote workshop, I asked the room about this:
    • Of more than 100 in the room, eight had examined their entire records.
    • Of those, six had looked errors, and two had found them completely accurate.

 

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Finally! Composite video of my call to action at Blue Button Plus Developer Challenge (New York, July 22)

Blue Button Plus event artLast month I blogged that a “lost speech” had finally surfaced. It was my closing speech at an event last July, and said why this moment (this year, this series of conferences) is an essential turning point:

“The event was a conference conducted by our Department of Health & Human Services to educate and encourage software developers about the “Blue Button Plus” initiative. … which is really important for the future of health IT, and not just in America; this innovation initiative will change what patients and families are capable of.”

And I said:
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Video of my AMIA keynote is live

In November I posted about how fun my opening keynote was at AMIA, the American Medical Informatics Association. See that post for tweets from the event and discussion.  It was great fun – a conference of 2,000 information science geeks – people who understand data, especially what it’s for and why data quality is important!  Boy does it save time when you start from a common view.

This week AMIA’s Jeff Williamson got  me the video of the speech.  Here it is, with Dr Danny Sands introducing me. (He’s one of the revered figures in the association; they’re also the ones who published his 1998 article on doctor-patient email.) See notes below about what makes this talk different from others. Dr. Sands starts by noting that it was 50 years since JFK’s assassination.

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Prize-winning Consumer Reports app seeks study participants: Hip or Knee Replacement

For U.S. residents – 

I spoke last month at a health price transparency conference in Washington, sponsored in part by Robert Wood Johnson Foundation. In a side session we saw presentations by the winners of the Health 2.0 Developer Challenge Consumer Reports logofor shopping tools. Consumer Reports won first place for shopping apps for their Hospital Advisor: Hip & Knee app. (The link has their demo video.) It’s a fabulous tool for comparing prices and quality for hip and knee replacements.

Now they’re expanding the data behind the app, so they want information from us. Team member Chris Baily sent this request – feel free to share widely:
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