e-Patient Dave

Power to the Patient!

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e-Patient request: business traveler with diabetes seeks virtual health coach

Latest in a series of e-patient requests.

Last year in an airport I bumped into a  long-ago co-worker. In light of the work I do in my travels it was stunning, because he said he’d been diagnosed with diabetes and he’d felt so alone … he’d never met another person with diabetes.

It stunned me because I’ve long said that diabetes patients are the archtypical e-patients – they have to be engaged in their care, and diabetes has long been the disease with the biggest online communities. But his providers had never mentioned connecting with others.

We parted, and he went back and did so. Today we’re Facebook friends, and now he writes this call for assistance. Kerri, Manny, Amy, Ginger, any of you, what say you? Thanks!

(As I read his notes below about all the things he’s done to be proactive, it’s deeply moving. He’s made a lot of progress but with some embarrassment he’s owning up to what’s not working; still committed to his goal, he’s reaching out for more support. Ain’t that engaged, empowered and responsible??)

So please, DOC (diabetes online community), dish up some advice.  I’ll link this discussion on my Patient Communities page for future reference.
______________

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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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The Lost Speech: “Blue Button Plus” developer conference, New York, July 22

Screen grab of shot from YouTube of my talk
Click to view the video on YouTube

This is a quickie post – at long last the video of one of my favorite speeches ever has been unearthed. It was in July in New York, and somehow it got lost, and arrived in my inbox today. (Well, actually, they posted it three months ago but forgot to tell me!)

All’s well that ends well. I just want your help in a BIG push to spread the word about this!  Time’s a-wasting!

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. Because I’m on vacation I’ll leave it to you to google that phrase, 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.

Unfortunately the video crew that day apparently didn’t realize I was showing slides that might also be part of the presentation (d’oh!) so they only took video of me. So the slides are on a separate site, Slideboom, embedded below, and they’re not synchronized to the video – if you want to see both you’ll need two monitors (ugh) and you’ll need to guess at when to click:
[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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Interview with Dr. Brian Goldman @NightShiftMD last May

Being interviewed by Brian Goldman MDLast May I spoke at Kingston General Hospital in Kingston, Ontario, a couple of hours northeast of Toronto. They’re a remarkable hospital – five years ago they were a disaster, and under the leadership of CEO Leslee Thompson and her team, they’ve become spectacular. One key example: their staffers’ hand hygiene achievement is now at 96%! (Most hospitals are at 60% or lower, which is the primary cause of hospital acquired infections ending in death.)

A key to KGH’s turnaround was to actively partner with patients they’d previously wronged, and many more patients since; patients are now part of every decision team, even hiring of doctors. As you might imagine, working with them on this event was one of the highlights of my year.

A major treat was meeting two bright stars of Canadian health media, journalist André Picard @PicardOnHealth and Dr. Brian Goldman @NightShiftMD, author of The Night Shift: Real Life in the Heart of the ER and host of the CBC Radio program White Coat, Black Art.

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Speaker Academy #15: The contract

Addition October 30, 2014: in comments a meaty discussion has started on a subject that’s related but different – NDA’s (Non-Disclosure Agreements). They rarely arise in speaking engagements but they can often be part of “the business of patient engagement.” Have a look if you’re interested.

e-Patient Dave contract template 2013This is the latest in the Speaker Academy series, which started here. The series is addressed to patients and advocates who basically know how to give a talk but want to make a business out of it. I’ll try to be clear to all readers, but parts may assume you’ve read earlier entries.

I’m at the Institute for Healthcare Improvement’s 25th annual forum in Orlando, participating in a day of patient speaker training. In side conversations one thing that came up is the business relationship: getting paid. And that starts with the contract.

Do you need a contract?

Contracts weren’t important for me when I had few engagements and little pay. But when things got busy I needed structure. The contract I use (at right) provides:

  • A clear record of logistical details: where, when, arrival & departure, how you can list it, etc.
  • A clear record of finances: fee, expense reimbursement, and down payment
  • Who’s expected to be in the audience. (Today one speaker told of a case where she was sure an audience would be nurses, and found out at the last minute it was patient advisors!)

And of course in the rare case where a relationship goes sour, the contract records who owes what to whom. It’s not that you’ll end up in court – to the contrary, it keeps you out of court, because the rules are already in writing.

I also added sections for things that kept popping up as problems: [Read more…]