Making the health data move

Health technology is getting more personal, as individuals increasingly use wearables to track their physical activity and monitor vital signs. At the same time, physicians, hospitals and health insurance carriers are moving their health records to electronic systems, and putting them online and allowing patients to view, capture, and share their health data. In the over-the-rainbow nirvana of health technology, all this data -- generated by patients, health records systems, consumer apps, medical devices and wearables -- will seamlessly interact, to the benefit of patient outcomes, clinical research and health care costs. But that dream is a long way off.

And if any one person is in charge of making that dream a reality, it's Karen DeSalvo, the National Coordinator for Health Information Technology and the leader of a years-long, stakeholder-driven process to create standards for interoperability in heath IT, and to drive electronic health record adoption in medical practices through $24 billion in incentive payments. Funding for those payments under the Health IT for Economic and Clinical Health legislation -- part of the 2009 economic stimulus– expired earlier this year. The Office of the National Coordinator is in the midst of refocusing its efforts on a long-term vision for promoting the seamless exchange of health information across electronic platforms.

The ONC is currently taking comments on a vision paper that spells out a 10-year plan for an ecosystem of interoperable health records. The agency is also nearing completion of a notice of prospective rulemaking for the third stage of "meaningful use," which will spell out the next phase of certification requirements for EHR vendors to take effect in 2017. On Sept. 11, the ONC published a final rule rolling back plans for an incremental, voluntary update of existing standards, in response to industry complaints that a midstream update of standards was burdensome and too expansive.

It's easy to get lost in the morass of detailed documents, presentations and deliberations generated by the policy committee process at ONC, in which practitioners, vendors, developers and other stakeholders generate recommendations for new policy and standards. But the big picture, according to DeSalvo, herself a physician, is that there is an amazing opportunity for technology-driven change in the way health data is used and shared.

"We did want to set out a vision that was aspirational," DeSalvo told FCW in an interview. The vision paper, released in June, sets out three-, six- and 10-year milestones for establishing a fully interoperable EHR ecosystem. "I think that we have a responsibility to the people of this country to move as quickly and in as coordinated of a fashion as possible, and take advantage of the fact that the market and technology and consumers have changed in their abilities and expectations. I think we have a chance to get it done," DeSalvo said.

The technical problems are "solvable," DeSalvo said. But a lot of the work is in getting vendors, physicians, and others with skin in the game to sing from the same hymnal. "We're going to have to come to some consensus about what's the sort of regulatory and sustainability framework that we all want to see," she said.

Some in industry and in Congress have questioned whether DeSalvo's office has the authority to play this kind of role. Rep. Fred Upton (R-Mich.), chairman of the House Energy & Commerce Committee, asked DeSalvo in a June letter, "under what statutory authority does ONC believe it is able to regulate health IT and electronic health records, particularly in (but not limited to) meaningful use areas," once funding for the incentive programs expires. Congressional Republicans were also uneasy with plans for a midstream update of interoperability standards -- plans that were largely scrapped in the recent rulemaking.

In addition to policy and political issues, there are factors inside the culture of medical practice that militate against more widespread sharing of medical information.

"We doctors are not being trained, or are not yet skilled in some of the ... vocabulary and language necessary to have a conversation with the vendor or with the [chief medical information officer]," DeSalvo said. Even where they are deployed, EHRs aren't necessarily being used by physicians, or by patients when they are given access to their data.

"People have to use it. There have to be some incentives around taking advantage of an interoperability infrastructure, interoperability that leads us to want to use the data for things like quality measurement or for clinical care. Even some places that have the infrastructure, we find that clinicians don't always use it, because it's not been as user friendly or for other reasons, and so we want to tackle all those things at once," DeSalvo said.

Some of the early returns on use of EHRs by patients are in. A new report from DeSalvo's office indicates that 28 percent of Americans were offered access to an online EHR in 2013, either through their health care provider or insurance carrier, or both. Of the group that got access, 46 percent viewed their records at least once, to check on test results or medication, or to share information with another provider or family member. The vast majority -- 88 percent -- found the online health record very useful or somewhat useful. Perhaps more interesting, 69 percent of all Americans surveyed indicated that online access to an EHR was important, a percentage that jumps to nearly 100 percent for frequent users of online EHRs.

At the same time, almost 40 percent of those surveyed experience gaps in their health information, in which patients had to provide information, test results or even copies of X-rays and other diagnostic tests to physicians because their data was not shared between providers. That suggests the problems posed by a lack of a nationwide, interoperable health record system are still plaguing patients and holding up care.

"I think at the end of the day what I'm hearing, increasingly, and what I believe Congress and others are also saying, is that the time is now for that data to be freed and moved in appropriate ways," DeSalvo said.