Sync for Genes, a joint program between the ONC and the National Institutes of Health, aims to establish clinical standards for the exchange of genomic data across the healthcare continuum.
“Rapid advances in the genomics field and the lack of standardized approaches to data collection, coding and exchange have resulted in incompatible infrastructures and nomenclatures,” ONC officials wrote in a November 2017 blog post. “A standards-based approach was needed to ensure that genetic data is interoperable among health IT systems and can be integrated easily with other clinical information.”
Under the initial pilot phase, five sites — including Nashville, Tenn.-based Vanderbilt University Medical Center, Salt Lake City-based Intermountain Healthcare and the FDA — tested clinical standards based on Fast Healthcare Interoperability Resources’ genomics standards. The widely-used FHIR framework was developed by Health Level Seven International, an Ann Arbor, Mich.-based independent nonprofit.
The phase 1 findings informed an updated set of FHIR standards.
As part of its next step, ONC officials selected four pilot sites to demonstrate how standardized genomic data can be shared between labs, providers, patients and researchers. The four sites are Lehigh Valley Health Network in Allentown, Pa.; the National Marrow Donor Program in Minneapolis; the Utah Newborn Screening program in Salt Lake City; and Weill Cornell Medicine in New York City.
Robert Freimuth, PhD, an assistant professor of biomedical informatics at Rochester, Minn.-based Mayo Clinic and co-chair of HL7 Clinical Genomics, will serve as the technical director of the project. The phase 2 pilots will focus on integrating genomics information into a clinical setting for care and research efforts and on expanding the FHIR standards developed under phase 1.
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