e-Patient Dave

Power to the Patient!

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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??

[Read more…]

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Biggest HIMSS news for families: CommonWell Health Alliance for getting our data to be where we need it

A quick note – mark my words, this is important –

At the big HIMSS health IT conference, six vendors of electronic health records have announced that they’ll be collaborating to share data as the Commonwell Health Alliance. That’s your data, our data, your family’s data.

Significantly missing from them is the Big Dog in the field, Epic, which is notoriously “all about us,” i.e. themselves.

Of course all the lesser dogs have a motivation in this – to band together and try to knock Big Dog off the top of the mountain.

Read about it here. Top EHR vendors join CommonWell Alliance to boost interoperability

My take: Market forces are starting to emerge. If underdog vendors can combine offer something the dominator doesn’t, that’s free enterprise working!
[Read more…]

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Let My Data Go: the HIMSS Interop Showcase

Title slide: Let My Data Go

As regular readers know, I feel rather strongly about the power of information. As a data geek, a high tech innovation freak, and a fan of improving health and care, I want the power of data to be set free.

In health IT, that means exchanging data between systems – because if it’s locked up in one system, nobody else can add value to it. And at the point where it might save a life, it might not be there.

And when that’s you, or your daughter, or your mother, or even some male relative, that could make all the difference in the world.

You think video killed the radio star?  In my career in industry, I lived through disruptive innovation, when desktop publishing killed typesetting. I know what power there is when data gets lose and innovators can add value to it. We need that in medicine. And that’s interoperability.

That’s what I’ll be talking about at 4:00 pm Monday in the Interoperability Showcase Theater, at the big HIMSS (health IT) conference in New Orleans next week. If you’re a data geek, or if anyone you know consumes medical services, this issue is important to you. Come give it up for interop – to let my data go!