I attended a smallish get together yesterday organized by Christine Kraft to think about Health 2.0 / DC in the epicenter type things, where we thought about some of the trends in social media use, social media use by physicians and medical groups (I got a lot of help on this one), journalists, and finally, a real story about a patient’s experience, here in DC, that really brings to light a problem with a meaningful use definition that doesn’t include “and the patients can see the data.”
I’ve been thinking about the idea that meaningful use must include “patients can see everything” since ARRA came out, and see my first mention of it in the Twittersphere around April 22. I have noticed since then that the idea seems to be picking up steam – initially I was told by some that this would be a “distraction” to the conversation. Now I’m sure that it’s not. Read on…
This is the story of Regina Holliday – it’s really worth a read, and I’ll quote some of it here:
Why do we have more transparency in special education law then in medical care? Why do we have more access to information on a box of Cheerios then on a medical chart? Why isn’t there a medical counterpart of the Freedom of Information Act? People tell me just concentrate on your husband, your family. Too many people have quietly done that. Too many wonderful fathers, mothers and children are gone. Too many graves have flowers on them. I will fight. I will not stop. I will not be silenced.
Regina told us her story in person, accompanied by the notebook of her husband’s medical record, which she was only allowed to get on paper, at $0.73 a page:
What struck us so much was the fact that his all started just a few weeks ago on March 27, 2009. A life threatening diagnosis creates an amazing call to action. As we learned about all the different ways that her husband’s care was potentially impacted by lack of information, our mood became more and more somber.
Regina happens to be an artist, and what she’s doing with her experience is as impressive as the challenge that she and her family is facing. At Washington, DC’s Pumpernickels Deli, she’ll be painting a mural of the Medical Facts of her husbands kidney cancer, patterned after the nutritional facts label.
The installation will be large (6 feet tall), in color, and will be permanent. It may just become a monument to information disparity in health care. Regina told us that the mural may be completed by this week. It will be interesting to see the reaction of the community to the art piece.
In the meantime, I still think it’s worth asking:
- Is e-prescribing as meaningful as it should be, if patients and families can’t review what’s prescribed and know what they are supposed to be taking?
- Is interoperability meaningful if it only connects doctors to doctors, hospitals to hospitals, and not patients to their health information?
- Are quality metrics meaningful if patients do not get to see them and use them to make decisions about how their care is delivered?
Finally, if all of the things that are currently being cited as meaningful use not reviewable by the people whom they matter to most, the patient, what’s the incentive for anyone to make sure they are accurate? Everyone prizes accuracy, and the best organizations in the world know that the way to ensure it is to make sure that people who generate information see the impact of what they do.
It reminds me of this quote:
“The key to the success of Ryanair and other low-cost airlines, lies in the way they think about combining processes. Ryanair’s cabin crews also do the cleaning inside the aircraft, so if they make a bad job of it they have to face complaints from passengers. In more traditional airlines the cleaners never see the passengers.”
– Yves Morieux, Boston Consulting Group
Comments, as always, welcome. As well as a trip to the Pumpernickels Deli….