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Data liberacion 2013: We are coming for your silos

My week-long adventure in D.C. started out with stories about personal health data at XX in Health on Sunday. I had the pleasure of spending the day with other women in healthcare, learning about their personal and professional challenges and getting ideas about how to overcome my own. The day was full of smart women […]

My week-long adventure in D.C. started out with stories about personal health data at XX in Health on Sunday. I had the pleasure of spending the day with other women in healthcare, learning about their personal and professional challenges and getting ideas about how to overcome my own.

The day was full of smart women (and yummy food) but my favorites were Jess Jacobs and Donna Cryer and Erica Chain. Listening to each woman talk about figuring out complex health problems, navigating the system and using data to make the best treatment choices was both inspiring and frightening. We are making a lot of progress, but we have a long way to go.

On Monday at Datapalooza IV, Health and Human Services released hospital pricing data on 30 common outpatient surgeries.

On Tuesday, Dr. Nirav R. Shah was the first winner of the health data liberator award to recognize Shah’s work as New York state’s health commissioner. Deven McGraw, the director of the health privacy project, said that the award was created to prove that liberating data and protecting privacy are not conflicting values.

Shah has used health record data from the Geisinger Health System in rural Pennsylvania to help patients get better care and mined data from two New York City hospitals to compare the effectiveness of different blood pressure medications.

“I have to thank the people of New York who paid for the data and own the data,” he said. “This year, when we celebrate the Fourth of July, we can add to our list of freedoms the freedom to own our own data.”

Then HHS announced the winners of a few challenges:

as well as several new ones:

On Wednesday, Wil Yu opened ENGAGE by talking about litter and how stories and images and icons got people to stop throwing their trash out car windows (remember the picnic scene from an early “Mad Men” episode?). He asked the audience to think about how people from the future would be shocked by standards of patient care in 2013, just as we are shocked by old attitudes toward litter.

He compared the work being done to make healthcare better for patients by doctors, patients, advocates, entrepreneurs and payers to art and music. Everyone will have to contribute to liberate data, change attitudes, and ease the burden of chronic conditions.
“It’s not about one Italian painter, it’s about the Renaissance,” he said. “It’s not about four guys in a band, it’s about Beatlemania.”

The week ended with the painting above by Regina Holliday. She illustrated the conversations at ENGAGE by painting what she heard. The tornado represents the force of everyone working to make the healthcare system better. The silos in the foreground are the data silos that are making it hard to coordinate care, make healthcare safer and help people understand their own health and risks.

“Do you know where that tornado is headed?” Holliday said. “Right for those silos.”

There are so many thoughtful details in the picture: the Blue Button in the center of the vortex, a small heart on the door and condoms on the windows of the church as a nod to my talk with Ramin Bastani of Qpid.me, the pills on the houses.

I was honored to receive the painting as a gift from Holliday. I will hang it in my home office as a reminder of this challenging, engaging, thoughtful, exhausting and fun week. The beautiful work of art is also a perfect illustration of the current state of patient engagement.

Individuals are working to get access to their own data and educate providers about HIPAA. HHS leaders are releasing public health data to run free in the marketplace. Entrepreneurs are working to make information more transparent and easier to get. Doctors are finding new ways to communicate with patients and help them stay well.

It’s just like what Peter Levin said about version 1.0 of the Blue Button, “It’s not perfect but it’s a helluva lot better than the big fat nothing we had three years ago.”

[Image from Regina Holliday’s blog]