e-Patient Dave

Power to the Patient!

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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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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:
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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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Patients in Power conference: eruption in the session on Cross Border Care

I’m extracting this from my previous post into a separate one. As I say below, payment policy isn’t my focus, but what happened in this session is an important example of the difference it makes when patients are running the show and dominate the audience. Don’t jump to conclusions until you get to the end.
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Whoa: this subject has caused eruptions among the patients in the audience. After the speakers finished (see below), during Q&A an audience member explained what was really going on, which had not been made clear by the (non-patient) panelists. An audience that had been silent all day became a small roar:

“You are out of touch with reality: look downward, at the lower parts of society!”

“We have a child with a brain tumor – he had surgery … we have no insurance card, and he has complications and now he cannot get surgery!”

Any of this sound familiar in the U.S.? Yes – but you don’t generally hear it said loudly, by people who feel the personal impact, at conferences.

The subject was the European Directive on Cross Border Care, which gives insured patients the right to go get care in another member country. The details of this policy are over my head, but in some ways the arguments are familiar in the U.S.: speakers on the dais gave talks about important new things that are possible, but to the patients in the audience it’s a whole lot of BS, because if you can’t go do what the speakers are talking about, it’s a waste of time: [Read more…]

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Patients In Power conference: European Charter of Patient Rights

European Charter of Patient RightsLatest update (below) 9:50 a.m. ET. I moved the section on cross-border care into another post.

I wish I had three heads to blog and absorb everything going on at the Patients In Power conference, described in my previous post. (I have immense respect for capable journalists!) But, we do what we can.

The current session is on health reforms, including the work to make equal access to care a reality across borders within Europe. The first speaker was Mariano Votta, Director of Active Citizenship Network. From their About page:

ACN’s mission is to promote and support the construction of the European citizenship as an “active citizenship” which means the exercise of citizens’ powers and responsibilities in policy-making.

Hey, that sounds a lot like the Society for Participatory Medicine’s vision of patients as active partners, with power and responsibility! So it’s no surprise that a primary focus of Active Citizenship is Patients’ Rights. And they have a European Charter of Patients’ Rights, created years ago. Until this trip, I’d been unaware of it! Fascinating:

  1. Right to Preventive Measures [Read more…]

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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.