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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My slides for Brookings Institution webcast

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!

 

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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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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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Going global: Let Patients Help Europe Tour, Fall 2013

Euro tour map Nov 2013
Map created by www.travellerspoint.com. Fun and free!

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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