Will Open Health Data Save Your Life?

BY Chris Amico  September 8, 2010 at 6:30 PM EDT

After one of health administrator Jim Traficant’s two liver transplants, a doctor told him, “The surgery is a science. The medication is an art.”

Over the next few months of recovery, Traficant’s body fought with his new liver. The organ was rejected. Medication suppressed his immune system’s response. His body retaliated.

Eventually, after Traficant looked over his own charts, he wrote an algorithm that would predict when his body was about to reject his new liver. Watching the data, his doctors were able to catch the rejection early and keep him out of the hospital.

“The great lesson I learned in my travails through the health care system,” Traficant told the Gov2.0 Summit Tuesday, “is that they have all the data you could ever hope for. What they lack is all the information you might need to save your life.”

Traficant has become an advocate for electronic health records, and for data-driven health care. “What we need is an interoperable health system,” he said.

Todd Park is one of the people charged with fixing that problem. As chief technology officer of the federal Department of Health and Human Services, his job description is basically two words: change agent.

One of his early projects is the Blue Button Initiative, a system that lets Medicare and Veterans’ Affairs patients download their personal medical records, with the idea that they’ll share that with health care providers.

“It’s a very simple idea,” Park told Tim O’Reilly. The government maintains piles of health data for every enrollee in Medicare and the VA, and makes that information available through online portals, but getting your data so far has been incredibly difficult.

“It’s your data,” Park said.

For lack of shared data, care is often duplicated and is rarely coordinated.

“Care is incredibly fragmented today,” Park said. “The current health system is currently terrible at coordinating care” for chronic illness.

“It’s not that we don’t have the best freaking doctors on the planet. It’s that we practice … in a 19th-century way.”