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US Health IT Office Eventually Wants Genomic Data in Sync for Science

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CHICAGO (GenomeWeb) – The Office of the National Coordinator for Health Information Technology, or ONC, has not done much in the world of genomic informatics in its 13-year history. But that is slowly starting to change for ONC, the agency within the US Department of Health and Human Services tasked with promoting, planning, coordinating, and setting strategy for health IT and the exchange of health data.

ONC is one of the three leaders of the Sync for Science pilot — along with the US National Institutes of Health and the Harvard Medical School Department of Biomedical Informatics — that supports All of Us, the NIH research effort formerly called the Precision Medicine Initiative cohort program.

"Our role within the [Precision Medicine Initiative] has been to accelerate collaboration around testing of standards that support health IT interoperability for research via pilots, adopting policy and standards to support privacy and security of the cohort participants' data, and advancing standards that support a participant-driven approach to patient data contribution," explained Teresa Zayas Caban, ONC's chief scientist and acting chief of staff.

In a conference call with reporters earlier this month, new national health IT coordinator Donald Rucker said that ONC was looking at the science around application programming interfaces to deliver data from electronic health records and other health IT systems to researchers.

Rucker, who joined ONC at the end of March, had been chief medical officer of EHR vendor Siemens Healthcare Solutions from 2000 to 2013. (Cerner bought the Malvern, Pennsylvania-based health IT division of Germany's Siemens AG in 2015.)

He remarked that healthcare really is the only industry that computerization has made less efficient. Sync for Science is one of the interoperability programs ONC is involved in that seeks to change that.

ONC expects the pilot to start late summer or early fall. "The idea here is to demonstrate the feasibility of API-based individual access to and donation of data for research," Caban said.

Participants include EHR vendors Epic Systems, Cerner, Allscripts Healthcare Solutions, and eClinicalWorks, as well as several healthcare provider organizations. All the vendors have completed their preparation work, and some provider sites are ready to go when the pilot starts, Caban said, though a few providers will not start until December or January.

ONC will be looking at the degree of individual participation among those recruited for the pilot. "And then we are going to be looking at whether the data move and what makes it over the transom," Caban said.

Notably, vendors are teaming with provider organizations to figure out how best to send data to research centers. "One of the things we'll be looking at, from the Sync for Science pilot perspective, is comparing at those different provider sites if there are any discrepancies as far as how the data gets transmitted, and if there are any inaccuracies in the data. That might come over via Sync for Science, as opposed to directly via the health provider organizations," explained Kevin Chaney, a health science administrator in the ONC Office of the Chief Scientist.

Sync for Science will recruit patients from the All of Us pool. Those selected will be given a link within their care providers' patient portals so they can send data directly from the EHR to the All of Us program database, according to Caban.

All of Us, which began enrolling beta testers last month, seeks to collect, store, and disseminate health, genetic, lifestyle, and environmental data on at least 1 million US residents as a way to jumpstart and advance research on personalized medicine.

One thing the Sync for Science pilot will not actually do is move genomic data around.

"We had a separate project called Sync for Genes that wrapped up in June," Caban noted. That pilot focused on development of genomics-related IT resources to "make it easier to begin to exchange genomic information," she said. ONC has to deliver a final report on Sync for Genes by the fall.

"But [Sync for Science] is still in its early stages," Caban said. "We're hoping to be able to further build on that work and conduct pilots with actual EHR developers and provider organizations to make it easier to move those [genomic] data as well."

For the purpose of the pilot, ONC will concentrate on clinical datasets specified in the most current EHR certification standards. Health IT products must be certified to federal functionality standards in order for care providers to participate in the EHR incentive program known as "meaningful use."

"Ideally, we would like to explore ways to integrate both [clinical and genomic] sets of data in a way that makes sense for providers and patients to use in the delivery of care and the management of care," Caban said.

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