ONC ramps up efforts to aid data exchange for precision medicine

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Federal standards and interoperability efforts are intended to play a role in increasing the utility of healthcare data to support precision medicine efforts.

The Office of the National Coordinator for Health Information Technology is looking beyond efforts to ensure interoperability of data between providers’ information systems to ensure data can be utilized for medical research.

“Healthcare information technology is foundational to precision medicine,” said Teresa Zayas Caban, chief scientist for ONC, speaking at a Building Precision Medicine Summit conducted by KLAS Research in the Chicago area last week. One of “ONC’s roles is to accelerate innovative collaboration around pilots and tests of standards that support health IT interoperability for research.”

The agency, prominently pushing for interoperability in the exchange of healthcare data, also is ramping up efforts to facilitate the use of patient information in other federal initiatives, such as the Precision Medicine Initiative and Sync for Science.

The successful use of electronic information in precision medicine will require portable health data information that can be actively exchanged among providers, researchers and individuals, Zayas Caban said.

In its latest deliverable, ONC last week released a PMI Data Security Principles Implementation Guide, part of an effort to assure individuals who participate in programs to share their personal health information in emerging federal research efforts.

For example, the Precision Medicine Initiative aims to recruit 700,000 patients from health provider organizations, with 300,000 direct volunteers. Data from healthcare organizations would be accessed from their electronic health records via custom data extraction, while individual volunteers’ health information would be gained through Sync for Science and other services.

Part of that effort includes Sync for Genes, which has the goal of sharing genomic information between laboratories, providers, patients and researchers. The first phase of that program, which involved a variety of provider, genomic and federal agencies, conducted a Connect-a-thon event in January. The second phase seeks to further expand efforts to test the integration of genomic data, with a report on tests expected this summer, Zayas Caban said.

ONC also espouses goals to advance standards development for the use of sensors and wearables and the social determinants of health, and the HIT agency is working on them in collaboration with the National Institutes of Health and the Open mHealth initiative.

In the realm of artificial intelligence, ONC is working to support data interoperability that can support the potential that AI can have on health and healthcare.

“A lot of work ONC’s work has been initiative focused,” she said. “We’ve wanted to take a step back and think about what research should be like, and what kinds of things are needed from the health IT infrastructure to make it easier to do research. We hope to be publishing this agenda in the coming year in support of advancements in biomedical and health services research.”

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