e-Patient Dave

Power to the Patient!

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A new era: the “consumer-patient,” via Inquire Healthcare

Inquire Healthcare home screen

A new website launched last month. I’m not involved with the organization, but I almost wish I were, because what I’m seeing is what I hope we’ll see everywhere, for every medical need.

The site is InquireHealthcare.org, a project of the non-profit Health Care Incentives Improvement Institute (HCI3). It’s the first time I’ve seen a new term that I love: “consumer-patients.”

(Some activated consumers hate the term “patient” and some activated patients hate the term “consumers.” My own views are in the glossary of Let Patients Help. Here I want focus on what you get when you mix the best of both – because that’s what they’re after on this site.)

It’s got three things I’ve never seen combined: shopping tools, self-assessment tools, and community activist tools. How’s that for a toolbox to create change? (Again, I wish I were bragging about my own work, but I never heard of them until they launched.) Specifically:

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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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New wheelchair icon nails the shift to “empowered and engaged”

Brian Glenney and Sara Hendren holding the new wheelchair sign in front of the old one
Photo by John Tlumacki, Boston Globe staff. Caption: “Brian Glenney and Sara Hendren have begun a campaign to change the design of wheelchair signs.”

My Twitter feed was abuzz yesterday with last week’s Boston Globe article by Billy Baker, Wheelchair icon revamped by guerrilla art project, and boy am I glad: aside from being a great story, it sums up everything I’ve been trying to explain about the shift to patient engagement.

I’ve spent time in a wheelchair, I used to teach in a school for handicapped kids, and my wife sometimes uses a chair, especially in airports. The usual view of the chair-bound person is as limited, confined, less able. In some ways that’s valid, but too often it’s overdone. Look at this photo, and compare the new icon with the one in the back:

  • Old: Occupant is sitting, being wheeled around.
    New: Occupant is in power, leaning forward, doing as much as s/he can. (Their site says “Here the person is the ‘driver’ or decision maker about her mobility.”)
  • Old: Occupant seems to be part of the chair.
    New (per the Globe): “the human [is] distinct from the chair, in an active position, with a feeling of forward movement.”

I’ll extend the metaphor: [Read more…]

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What should patient engagement be? An open-ended survey

AIR's model of the dimensions of engagement from Health Affairs, Feb 2013
AIR’s model of the dimensions of engagement from Health Affairs, Feb 2013. Click to visit their site’s description.

Survey is open through Friday, Dec. 20, 2013.

I’m playing a [modestly paid] role in a project produced by A.I.R., the American Institutes for Research, a Washington think-tank I crossed paths with last year through my work with Aligning Forces for Quality.  Boy do we like each other!  Very much think-alikes. Truthfully, it’s hard to figure out how to incorporate “just a plain old patient” voice into their work (“What do you pay for a thingie who has no master’s or PhD???”) but these guys are working on it, and I love it so I’m playing along.

A.I.R.’s Center for Patient & Consumer Engagement is producing a think-tanky white paper on where patient engagement should go, and, brilliantly, THEY WANT TO KNOW OUR OPINION ON IT! Of all things!  So this is YOUR chance, your opportunity, you AND your friends.  There’s no limit on how many responses they’ll accept. (The graphic at right is their concept a year ago of the dimensions of engaging patients, published last February in their article in the Health Affairs issue on patient engagement.)

To be clear: this survey is your chance to speak into a document that a lot of planners will read.  It’s a simple 5-question survey, really open-ended, looking for YOUR experiences about what feels right or feels wrong, and what medicine can learn from it. The survey has no underlying academic assumptions about what patient engagement should be. They really want to know how we (you) see the issue.

Here’s a link to the survey itself – five questions, each with an open-ended text box. I’ll summarize them, because frankly I think what they’re after isn’t always clear in the survey itself. :-)
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“Typesetters have proofreaders. Doctors don’t.” Let Patients Help!

iHealthBeat screen capture (click to visit the article)
Click to visit the article

Please see the “call to action” at bottom of this post: if you have a story of patients improving the chart – or a provider preventing it – put it in a comment on iHealthBeat.
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I have a new essay in iHealthbeat’s “Perspective” feature: Patient Participation: Let Patients Help With Medical Record Quality, Completeness.

This was a pretty great invitation. As it says at the bottom of the site, “iHealthBeat is published daily for the California HealthCare Foundation by The Advisory Board Company.” CHCF (the foundation) has done a ton of great work over the years at understanding the practical realities of medicine as it works out for families and communities, and The Advisory Board Company is a respected, high profile company that advises health leaders of all sorts. So when Managing Editor Kate Ackerman wrote to me – six months ago! – inviting an essay, I was thrilled:

I wanted to see if you’d be interested in writing a Perspective article for iHealthBeat on the importance of patient engagement in health IT efforts. Here’s a link to our Perspectives archives so you can get a better sense of the feature: http://www.ihealthbeat.org/perspectives-archive.aspx

One never knows why the timing works out the way it is, but it didn’t work then, and when she asked again recently, it did. Of course, back then the angle wasn’t clear to me, and this time it was: Typesetters have proofreaders; clinicians don’t. Let patients help!

If you want to support the movement, see if there’s something you could add an anecdote in the comments on that post – a story you know, first-hand or close, where patient and family engagement in the medical record prevented a disaster. Or helped in some smaller way.

 

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14 minute “Show Opener” speech at the Consumer Health IT Summit last week

Slide from my talk (click to watch the video)Who says the gummint can’t move fast??  Last Monday morning I gave the opening talk in Washington for the Consumer Health IT Summit, and holy cow, the video’s already been edited and is live on YouTube!

If you can’t see the video below, click the screen capture at right to view it on YouTube.

(Caution – them same gummint people live with policies that didn’t allow me to plug in my computer; we had to use theirs, which of course hasn’t been upgraded from PowerPoint 2007 yet. The contractors assured me my slides would work fine, and after a half hour of emergency surgery they mostly did, except the one where the text came out black and the slides that kept changing spontaneously – always fun for a speaker to deal with. But the message got across!)

This is really important, folks! Speak up! Get involved!

There are rules and laws and regulations that say you DO get to access your data, and it’s a Federal civil rights violation for a provider to tell you no. And it’s really good that our data will get liberated, because that means innovators can create software and gadgets to do fancy and useful things with your data. And your kids’ data. And your elders’, and your friends’.

Educate yourself – “free your mind,” as we said in the Sixties. The new era is coming – let patients help! And to do that, you gotta have copies of what your doctors see. Get involved.