Power to the Patient!
Updated at noon – fixed missing links
Event: “Involving Clinicians in Payment and Delivery Reform: The Role of Social Media and MOOCs.” The event’s website is here and the Twitter archive on Symplur is here. I’m on a panel 11-11:45 and they can’t display slides, so I’m posting some here, selected based on what I’ve heard in the previous panels. Social media busts through boundaries!
Last 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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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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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…]
Let Patients Help is a successful book, but in the early days of its movement, it was common to hear skeptics say “This is only in America.” Boy was that wrong.
The first massive proof was TEDx Maastricht, the seminal event constructed by Lucien Engelen from Radboud UMC (university medical center) in the Dutch town of Nijmegen. It was such a big deal – the first conference I know of anywhere that was totally focused around patients … so many patients that a blogger Grand Rounds was devoted to videos of the talks patients gave at that event.
It was the first time anyone heard the chant “Let Patients Help” in a TED Talk, and the response has been enormous: almost a half million views so far on TED.com. TED says there’s usually the same number on other sites, so that means almost a million views. Volunteers have added subtitles created in 26 languages, so I’d say it’s not “only in America.”
This fall, Europe goes “e,” big-time, with four events in one month.
In November four events in four European customers will focus on Let Patients Help, all driven by visionaries who are seriously working on patient engagement – in Athens, Budapest, Amsterdam and Brussels.
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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!)
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.