e-Patient Dave

Power to the Patient!

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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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“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.

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“You can ask to see or get a copy of your medical record & other health information”

Updates:

  • Feb 1, 2017: fixed some expired links.
  • July 19, 2015:
    • This has turned into by far the most-viewed and most-commented post ever on this site. This year alone it’s averaging 1,000 views a month.
    • A few weeks ago the HIPAA authority Deven McGraw, who’s mentioned three times below, was put in charge of this issue at the Office for Civil Rights. Hooray!
    • Last Friday (7/17/15) the New York Times ran an important related article, Hipaa’s Use as Code of Silence Often Misinterprets the Law
  • Sept 12, 2013: See new section on Resources for Action at bottom.
  • July 20, 2013: see attorney David Harlow’s comment below about a Federal exception for lab data, though state law may still protect you.

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OCR's HIPAA Rights flyer (PDF)
OCR’s HIPAA Rights flyer (click to download PDF, 456k)

I’ve been infuriated recently by two “gimme my DaM* data” episodes where providers told me “No – you can’t have the report. We only send it to the doctor.”

That’s illegal.
It’s a Federal civil rights violation.

I am legally entitled to my medical record,
and you are entitled to yours.

Refusing to give it to you
subjects them to
Federal civil rights penalties.

Yet so many doctors and hospitals simply don’t know this. In my case, two independent shops recently said no – a lab and a radiologist – leaving me powerless. Well, I don’t take well to being powerless. So I acted. On Twitter today I said:

This feels ironic: a radiology shop is refusing to give me the radiologist report. Anyone have a link to “Docs MUST give pts their data”?

Within minutes I had responses from my excellent peeps [Read more…]

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Newest speech video: SAS Institute health analytics – business / tech / data conference

SAS speech video page screen capture

My videos page has recordings of various speeches. Here’s the latest – and, some are saying, my best. It was a month ago in Cary, North Carolina, at a big event conducted by SAS called “Health Analytics: From Big Insights to Big Breakthroughs.” It’s 56 minutes long.

Here’s the direct link to the video. If you’re not already registered on that site, you may need to register here.

Not all the slides are shown in the video; here’s a copy of them on Slideshare. Slideshare’s display software is pretty weak compared to what I do with PowerPoint :-) so some of the layouts display wrong on their site, but you can get the idea.

Don’t miss Peter Diamandis’s talk that day

Near the beginning I mention it. Here’s the link.

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Make it EASY to manage my pillbox!

Blue Button logo

Vote us up! (Alicia Staley and me)
Click to visit our proposal on the site, register if you need to,
and use one of your votes for this awesome idea!

(Or all three of your votes. :-) It’s allowed.)

Have you ever seen the set of pills that have to be managed for a person with a slew of prescriptions?  It’s nuts. What’s even more nuts is that with all we pay for healthcare and computers in this world, there’s no software anywhere that makes it easy to do the right thing. Let’s change that!

(I’m not complex at the moment (at least my prescriptions aren’t), but when I was sick I sure was. Farther down is the true story that gave me this idea.)

This is my submission for the “Blue Button CoDesign Challenge” that was sprung on us last Monday by the good folks at Health & Human Services, who are doing this radically modern thing – unusual for government, eh?  They came up with a fascinating challenge and are opening it to the public, with prizes! For details you can check out the challenge site.

Here’s my proposal. Over the weekend I’ll flesh out this blog post with more details, but for starters Friday afternoon, here’s the big idea:

Build me a Blue Button enabled tool that….

… makes it easy to manage our frickin’ prescriptions and take the right pills at the right time!

My doctors’ computers know my prescriptions and when I’m supposed to take them, right? So do the pharmacies. And computers can mash up all kinds of information from different sources, and organize it, and display it clearly, right? So why do they make ME figure out when I should take what?

Let’s have an app that can read all my prescriptions, and organize them into times of day. Even better, it could print out my pillbox and add pictures of what goes in each square. Why not?? Isn’t that what computers do – make complex information easy??

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