Electronic health record (EHR) systems store incredibly rich data about individual patients, but historically, individuals have been unable to access this information easily and share it for research. However, use of patients’ data could accelerate scientific discovery and progress toward precision medicine. Permitting patients to connect and share their data with researchers—while maintaining the security and privacy of those data—is just one of the many benefits to the research community of the ONC‘s Cures Act Final Rule released in March 2020.

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Genomic data—information about the complete set of genes that make up each individual—have the potential to revolutionize healthcare and usher in a new era of precision medicine and scientific discovery. However, there is currently no standard way of presenting genomic data, and the standards for integrating those data with electronic health record (EHR) and other health information technology (IT) systems remain under development.

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We know SDOH—the conditions in which people live, learn, work, and play—impact our health, delivery of care, and coordination of services in many ways. However, SDOH data are often captured outside the healthcare setting, and this information is not shared consistently during the course of care. Meanwhile, the increasing use of sensors and wearables provides a unique opportunity to capture “care between care,” allowing patients, caregivers, and clinicians to monitor health status and adjust treatment as needed.

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The increasing availability of electronic health data in the 21st century has tremendous potential to ignite a new era of inquiry and discovery. ONC is part of the Precision Medicine Initiative (PMI), a federal effort to spur the next generation of health research by rethinking access, aggregation, storage, and analysis of many kinds of health and health-related data. With precision medicine, researchers will be able to make new discoveries about health and illness to bring a more personalized approach to patient care.

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Earlier this year, the Office of National Coordinator for Health Information Technology (ONC), in partnership with National Institutes of Health (NIH), announced the Sync for Genes pilots – an effort to strengthen genomic data sharing that is part of the Precision Medicine Initiative.  As a result of this effort, a set of genomics specifications have been refined as part of the Health Level 7 (HL7®) Fast Healthcare Interoperability Resource (FHIR®) standard,

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