Oh No You Don’t – The day consumers rejected norms around Health Information Technology

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“Oh No You Don’t” – National Partnership for Women and Families

Once when I was a medical student, I ended up seated next to a faculty member from my medical school on a plane trip. A surgeon, she told me how one day she decided to use the locker room labeled “doctors” instead of the one labeled “nurses” to change into her scrubs in the operating room, because after all, she was a doctor. The story was amusing because it was so hard to believe that such a norm existed in medicine.

Yesterday, I received this e-mail message from Debra Ness from the National Partnership for Women and Families, and I think my life flashed before my eyes, or at least the last seven years of it.

Way back in 2000 to 2003, when I worked with incredible people on building electronic health record systems that involved patients, there wasn’t outcry from many (or any) consumer groups that people like me could work with to change the norm about sharing data with patients as part of electronic health record systems.

In fact, maybe there was pressure not to change the norm from these groups, based on real privacy concerns, that maybe were amplified in support of the default.

The result was that it took visionary leaders before me to stake their careers on doing something different, which they did, and there were great results.

I remembered all of the times I would say, “The customer of the electronic health record is the patient” to a table/roomful of people who seemed somewhat taken aback. The response would either be no response or, “The EHR is for doctors.” Over time, I met people who would say “The EHR is for doctors. The PHR is for patients.”

Despite the fact that I knew and worked with many many people who thought differently about involving patients and families through health information technology, It wasn’t the “norm” to think about the EHR or even HIT this way and I knew it. I figured that the two letters after my name are hard to take away, so I tried nonetheless.

This is NOT to say that I didn’t meet health care professionals who wanted to support patient and family involvement – I met (and know) tons, and actually, I think the overwhelming majority support this. It was just the occasional group meeting or discussion that the current “norm” would slip out.

Like the time when I was at a public meeting to discuss HIT definitions and a senior official from a large body representing educational institutions said, “Isn’t e-mail from patients something like spam?” Stuff like that didn’t frustrate me – it made me wish that smart people spent their mental energy supporting a different null hypothesis, because then amazing things would happen.

This is what came to mind when I received this e-mail.

The message, a reaction to an advertisement purchased by the American Hospital Association , is from the National Partnership for Women and Families, who fought for an end to discrimination for pregnant women, signed into law in 1977. The National Partnership also convenes the Consumer Partnership for eHealth, which features a very long list of prominent consumer organizations.

Their null hypothesis has changed. Check out this press release.

And today, I went to the Meaningful Use Workgroup of the HIT Policy Committee to watch @ReginaHolliday testify, and projected on the 12 foot screen was a photograph I took with my iPhone one year ago, of Fred Holliday’s medical record (“copied at a cost of 73 cents a page, with a 21 day wait”). I didn’t imagine a year ago that this photograph would be part of a US Government process, staffed by people committed to patient and family involvement, to understand the meaningful use of electronic health records. Kind of blows the mind.

So, now I have a story to tell to the medical student that sits next to me on a plane trip somewhere –

“One day, we decided to say that the tool labeled “electronic health record” is mostly for patients.” I hope they’ll be amused!


Regina Holliday Testimony 6.jpg

25 Replies to “Oh No You Don’t – The day consumers rejected norms around Health Information Technology”

  1. I remember when you took that photo – Regina Holliday's story still resonates with me, no matter how many times I hear it or see that lonely, giant notebook.

    Paul Tang summed up the first panel's testimony by saying that they were talking about a "mind shift" similar to what you describe. I have seen the same thing in the Pew Internet Project's survey data: Access to the internet is changing people's relationship to information, which is changing their relationships with health professionals.

    Here are my notes from that panel:
    http://e-patients.net/archives/2010/04/testimony-

    And here's a post I wrote that talks a bit about that changing relationship:
    http://e-patients.net/archives/2010/04/health-2-0

    Thanks again for documenting the changes you see! Sometimes it's radical just to observe with clear eyes.

  2. As most practicing physicians in the trenches know all too well, the EMR is more for health plans and lawyers than patients or doctors.

  3. Nice story Ted that is truly reflective of the changes that are and will occur in healthcare. As Dr. Tang put it, at least according to Susannah, this is a significant shift in thinking. Reminds me of an event last fall where I presented and on the panel was the CMO of UPMC where he basically stated that of all the MU criteria put forth, citizen access (I've begun using this term versus patient or consumer) to their PHI and potential control thereof will be the most challenging to implement, not from a tech perspective, but policy.

  4. Thanks, John!

    And…a ha – yet another norm we can change together!

    From: "This is hard to do"

    To: "If we think this is hard, then it will be."

    To: "This is hard not to do"

    I know you know this journey well, it's been a pleasure to travel it with you,

    Ted

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