e-Patient Dave

Power to the Patient!

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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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Speaker Academy #3: Q&A on selling (Trevor Torres)

Trevor Torres
“Diabetes Evangelist” Trevor Torres

Lessons one and two were about understanding the world into which you want to speak, using text written by Randi Oster. We’ll continue with her tips #3-5 tomorrow but today I’ll step off that theme to answer some questions posed in a comment on Lesson 1 by Trevor Torres, a 17 year old hotshot “Diabetes Evangelist” who’s just started doing speeches. (See his first speech video* on his site.)

Here’s Trevor’s comment, with my answers embedded:
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The main thing I’m interested in right now is getting more speaking gigs! To that end, some questions:

[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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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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Tool help please! Evernote? Workflowy? SpringPad?

Springpad logo
Springpad
Evernote icon
Evernote
Workflowy "head" image
Workflowy

Addition Thanksgiving morning: Your responses in the comments below have already gotten juicy-good and taken this to the next level. Don’t miss ’em. And thanks!

Thanksgiving starts my annual season to reflect and look ahead. It started five years ago – my first blog, “The New Life of Patient Dave,” was born at Thanksgiving, just after my cancer. Each year since then it’s been my time to ask: with all I’ve seen in the past year, people I’ve met, concerns I’ve heard, what’s next? Who will I be in the coming year?

And this year I need help. Tool help, to organize my thoughts. Because there are a lot. So if you’ve faced this too, what have you learned?

The work ahead:

[Read more…]

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We perform better when we’re informed better

Here’s a short piece I wrote for an event next Monday, October 29, at the Rijksmuseum in Amsterdam, hosted by KPN, the big Dutch telecom firm.  The title is from a slide I used last spring at the Kanter Family Foundation’s Learning Health System conference. After, I’ll discuss the event – and some provocative questions.
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People perform better when they’re informed better

The e-patient movement – “empowered, engaged, equipped, enabled” – presents challenges to our culture: it creates new roles, new expectations, and new beliefs about what’s possible. It creates questions in the minds of educated people: can ordinary citizens, with no medical training, handle the truth? Handle new knowledge? Handle information that’s always lived in the hands of trained professionals?

We can’t see the future, but we can look to precedents – many precedents, in my life and long before.

Thirty years ago computer professionals raised the same questions about letting you and me have computers. It was hard to imagine that you and I, not trained as engineers, could understand these tools, much less do anything useful with them. The same happened in my industry – typesetting – when desktop publishing arrived: it was hard for us, the trained typesetters, to imagine ordinary citizens having fonts on those computers and making pages. But you did, and you do. Do you want to go back?

The problem is that our culture is challenged when tools and information reach people who’ve never had them before.

Sometimes the change is radical. When Gutenberg printed his Bible in 1455, [Read more…]