e-Patient Dave

Power to the Patient!

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Do you know someone who responded inspiringly after a medical error? Nominate them.

MITSS HOPE award logoNominations close Friday for this inspiring award.  I’ve twice attended their award event and both times I’ve just been touched and moved by how good people have responded to a real setback – a medical “adverse event,” as they’re called, so euphemistically.

Linda Kenney almost died from an all-too-possible accident … a local anesthetic got into a blood vessel and stopped her heart; she woke up three days later in an ICU. Out of that experience – and the healing that eventually happened with both her family and the involved anesthesiologist – she started MITSS – the Medically Induced Trauma Support Services.

She wouldn’t call herself a hero, but I will … do you know someone who’s responded to such an event by Supporting Healing and Restoring Hope?  That’s what the MITSS HOPE award is about.  The process isn’t hard – you just write a 500-1000 word essay, and fill in a form as described here.

Please participate.  Here’s a bit more, from the award’s home page:

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The OpenNotes project goes wide: a million patients and families enabled by access to information!

On the e-patients.net blog, I just posted an important update about the OpenNotes project, which is letting patients see what their doctors wrote – online. Look: over a million patients and families are getting access now.

Please click this screen capture (or click here) to go read the post. And ask your doctors and hospitals to get with the program! If you don’t ask, they won’t know you want it.:-)

Screen capture of OpenNotes post on e-patients.net

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Partnering WITH Patients: the IOM gets it right! (And I have a suggestion.)

IOM logoI often compare the “listen to patients” movement to other social movements from my delightfully long life. :-) One of the folk songs of my adolescent years was Bob Dylan’s “The times, they are a-changin’.”

And so they are.

Last fall the Institute of Medicine – the pinnacle of academic medicine – published a major report, Best Care at Lower Cost, which I’ve mentioned here repeatedly. Assembled by an absolutely blue-ribbon team, it has many quotable items, but my favorites is this: (Page S-11, page 34 of the PDF)

Patients Included badgePatient-Clinician Partnerships

Engaged, empowered patients – a learning health care system is anchored in patient needs and perspectives and promotes the inclusion of patients, families, and other caregivers as vital members of the continuously learning care team.

Read that carefully. A lot of people who work in medicine don’t yet know about this report, and many who do haven’t yet had it sink in. A perfect example is Medicare, with their well-meaning paternalistic project “Partnership for Patients.” Note: it’s a partnership for patients, which is not something you’d say if you thought of patients as someone who’s on your team.

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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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Forbes post on a fascinating TED idea: put capability in untrained hands??

Forbes screen grab (click to visit on Forbes)
Click to visit the post on Forbes

Update 5/10: fixed the link to the Forbes post. Thanks to Flora for reporting the mistake!

My new post on Forbes has generated the most activity I’ve had there, in terms of views, Tweets, links and comments. Its topic is an amazing new thought that’s come to light just this year, thanks to a TED Prize talk that was given this winter by a guy name Sugata Mitra. His thing is “SOLE”: Self Organized Learning Environments.

(I know some of you already saw this on Forbes, but a lot of my readers don’t go there.)

Click the image (or here) to visit the post and watch his 2013 TED Prize talk.

He’s clearly crazy.  In 1999, in the slums of New Delhi, he put an internet-connected computer through a hole in the wall that’s the boundary of the slum region, so little kids could get at it. He gave them no instruction, and came back months later. What he found, as you’ll see, is that the kinds had figured out all kinds of stuff, just by poking and exploring. Without mature supervision.

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“17 years for new medical practices to be adopted”: source

e-Patient Dave Slide - Balas IOM 17 year adoptionImportant update next day: see comment below by Michael Porembra (and my reply) with new source information and important data on changes in rate of adoption.

A tweet from South By Southwest by @DVanSickle led me to finally post this, which I dug up last spring with the help of the ever-awesome @TedEytan of Kaiser. It’s part of my presentation at the Kanter Family Foundation’s confab last May for their Learning Health System initiative. (Video of that speech is here.)

The issue is a statistic often quoted by advocates for improving medicine: “On average it takes 17 years for new practices to be adopted.” That’s pretty shocking – the idea that some docs may not know something important to your college-age kid, even if the info came out when that kid was in diapers!

The source turns out to be a paper published by the Institute of Medicine in their Yearbook of Medical Informatics 2000. I’ve been unable to locate the full text online; somebody (Ted?) emailed me a scan, from which I screen-grabbed the excerpt in this slide.

For more validation, here’s a Google search of the table’s title, and here’s a search of “Yearbook of Medical Informatics 2000″+Balas.

People always ask “Is it still true?”

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