Meaningful USe - or, whose health is it, anyway?

When I Googled "meaningful use" this morning just before writing this post, the search yielded over 10 million results. Googling "meaningful use and patient" gets you over 1 million results.

Dr. Ted Eytan wrote a post on his blog, Ted Eytan, MD, on May 28, 2009, which captures the core of meaning of "meaningful use." He titled the post, "Is It Meaningful If Patients Can't Use It?"

The bottom line: it's not meaningful, Dr. Ted says, if patients can't see everything.

Dr. Ted met with a group of healthy thinkers in Washington DC this week to discuss patient empowerment in health; these thought leaders included Susannah Fox of the Pew Internet & American Life Project (@susannahfox); Claudio Luis Vera of Studio:Module (@modulist); Cindy Throop of the Center for Information Therapy (@cindythroop); Christine Kraft, the Founder of the e-Health Workshop (@christinekraft); and, Regina Holliday (@reginaholliday) who shared her personal healthstory.

Regina talked about her husband Fred's recent kidney cancer diagnosis and theatre-of-the-absurd encounter with the health system. Read the details here on her blog. See the photo: this is Fred's paper-based medical record, painstakingly (emphasis on the pain) accumulated by Regina @ $.73 a page...per her HIPAA rights.

Now that Fred is more comfortable in hospice, Regina has taken on a parallel project beyond being a caregiving loved one: she's creating a mural based on the USDA-approved nutrition label which diagrams a patient's personal kidney cancer profile.

In her words:

Today I had an epiphany. You might have seen my mural work on the side of the American City Diner. I painted all those famous stars from the 30's through the 50's about six years ago. I also painted the mural of the children reading at Child's Play. I painted the St. Jude's Hospital Thanks and Giving mural on the old Hecht's Building about five years ago. I would like to do a new mural series. I want to do a Medical Advocacy series. I am doing a design based on the food packaging Nutrition Facts label. Instead of Nutrition Facts it will be Medical Facts. I want do a simple anatomy drawing that highlights the patient's illness. To the side of this will be an easy to reference list of all pertinent info. This will be done in such a way to mimic a nutrition label. I think this will be very eye-catching. I want senators and congressmen, bus drivers, and waitresses to drive by this, and I want this kind of clarity and transparency for themselves.

There is no greater illustration of Participatory Health than this story of Regina and Fred's.

Health Populi's Hot Points: Dr. Ted tweeted about a patient-centric meaning of meaningful use for EHRs around April 22, 2009. Since then, countless thought leaders have expressed similar ideas; a few of these include:

Peter Neupert of Microsoft on Neupert on Health
Dr. David Kibbe and Dr. Brian Klepper on The Health Care Blog
The Markle Foundation in Achieving the Health IT Objectives of the American Recovery and Reinvestment Act
Gilles Frydman, Founder of ACOR, on e-Patients
Josh Seidman from the Center for Information Therapy
Dr. Steve Beller in TrustedMD
John Moore of Chilmark Research
Dave DeBronkart on e-Patients

I was gratified to be invited to give testimony at a hearing of the National Center for Vital and Health Statistics (NCVHS) in Washington, DC, on May 20. On my panel sat Bob Coffield, a prominent health lawyer who also writes the Health Care Law Blog, and Daniel Weitzner of MIT's Computer Science and Artificial Intelligence Laboratory. Here is the agenda for the 2 days of testimony.

As we were the first panel kicking off the two days of testimony, Bob and I set forth a context of person-centric and participatory health. By the end of Day 2's proceedings, the NCVHS panel remarked they couldn't remember a hearing where "the patient" was discussed more. You can download the broadcasts here.

Our testimony will be followed on June 9 with more insights from the health citizen - including input from Susannah Fox of the Pew Internet & American Life Project and Dave DeBronkart, who has reached a kind of celebrity status in HIT circles as e-Patient Dave based on the misadventures of his personal health information interactions with the U.S. health system.

Dave is now joined by Regina. We know there are millions of Dave's and Regina's. They are Us.

So Regina's breaking down the walls, the silos, the closed files, fighting through the un-transparent world that is health care in America. I will make my own pilgrimage to the Pumpernickels Deli in Washington DC, where Regina's health empowering murals will be featured, very soon.

Meaningful use is about US.