Precision medicine creates treatment and prevention strategies that meet patient needs by considering individual variability in their genome, environment, and lifestyle. While precision medicine can revolutionize health care, it requires access to an unprecedented volume and variety of data, and an infrastructure that rapidly brings new discoveries to bear.  Recently, we published an article in the Journal of the American Medical Informatics Association that describes health IT’s vital role in precision medicine based on key insights from a series of ONC projects supporting the Precision Medicine Initiative. 

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.

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.

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.