DeSalvo: Big data, privacy will help ONC pivot focus

National Coordinator for Health IT Karen DeSalvo, at a meeting with reporters in the District of Columbia on Thursday morning, talked about the shifting of priorities at the ONC as grant funding from the American Recovery and Reinvestment Act dries up. She pointed out that while the agency's federal strategic plan to date has focused on improving quality and lowering costs via programs like Meaningful Use, the agency is looking to expand that sphere to efforts around areas like patient-generated health data.

That, she said, begs questions about other types of information that will come onto health records--beyond the healthcare system--which opens the door to conversations about big data, privacy and security and HIPAA.

"There's an opportunity to be more inclusive of data sources, not only from public health, but social and human services agencies and, of course, patient-generated health data and patient-reported outcomes," DeSalvo told reporters. She added that things like genomics, proteomics and other microdata will need a home as ONC moves out of the research and development phase of precision medicine into "something that's a lot more sophisticated."

She called such work "more challenging" from a privacy perspective, given the departure last week of Joy Pritts, the agency's first chief privacy officer, but said that ONC is working "hard and fast" to fill the position.

"We ... want to make sure that shop doesn't lose any momentum," DeSalvo said. "It's a place that we have a lot of responsibility."

DeSalvo also talked about the agency's interoperability push, calling it a "thorny problem that we have yet to solve;" ONC, of course, published a 10-year plan for interoperability last month. To that end, she said, the agency wants to hear, not only from health IT stakeholders about their interoperability successes or failures, but also from other industries to get a sense for how they solved similar issues. 

"Philosophically, this is going to take everybody's input," DeSalvo said. "We need to build something that is not just about some of the challenges we've faced with getting vendor products to be able to communicate, but a broader platform."

The plan was met with tempered enthusiasm shortly after its release.

Currently, DeSalvo said, the health IT standards and policy committees are working together to examine the JASON report, which pointed to the current lack of interoperability among data resources for electronic health records as a "major impediment to the exchange of health information." The authors of the report call for the Centers for Medicare & Medicaid Services to, within the next 12 months, define an overarching health data infrastructure that's interoperable, protects patient privacy, and facilitates access for clinical care and biomedical research.

DeSalvo said the committees will focus on governance and the regulatory environment, and will present their findings in October. From there, she anticipates a roadmap to be published by January that will "be specific enough that people know what they're supposed to do and when."

Despite that expected roadmap, questions have arisen from lawmakers concerning the agency's regulatory authority. DeSalvo said that ONC has responded to those questions, but did not reveal the nature of the dialogue.

She did say, however, that she will meet with legislators regularly on Capitol Hill to make sure they understand ONC's role within the U.S. Department of Health and Human Services.

"We know what our boundaries are," DeSalvo said. "We pay attention to that. They're just doing their job, and that's OK. There were some questions they asked and we answered them. I'll leave it at that."