Empowering Patients to Advance Precision Medicine, One EHR at a Time

Kevin Chaney, MGS; Teresa Zayas Cabán, PhD; Josh Mandel and Stephanie Devaney | May 18, 2020

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.

Sync for Science (S4S) is a collaboration among ONC, the National Institutes of Health’s All of Us Research Program (All of Us), and the Harvard Medical School Department of Biomedical Informatics. It is one demonstration that shows how patient participation can help accelerate research and discovery. With just a few clicks, S4S allows researchers to receive EHR data from a third-party application used by a patient based on open data standards. Information technology companies such as Apple, Google, and Microsoft are now using the same application programming interface (API) standards leveraged in S4S to enable sharing of health data for a variety of purposes, including research.

A recent article published in the New England Journal of Medicine highlights how participants in the All of Us Research Program can share their EHR data, including through Sync for Science.

Launching Sync for Science: Standards and Pilot Activities

S4S uses the Health Level Seven International® (HL7®) Substitutable Medical Apps, Reusable Technology® (SMART®) on Fast Healthcare Interoperability Resources® (FHIR®) standard. This helps ensure that data stored in different EHR systems can be shared in a similar and consistent way. S4S also employs the OAuth 2.0 standard, allowing individuals to securely authorize an application, such as the All of Us app, to receive health information via their provider’s patient portal using the individual’s existing authentication credentials (e.g., username and password).

Leveraging these standards together enables individuals to share their health data securely with a third party via an API. ONC’s Inferno testing tool allows developers to test APIs and ensure that they conform to the FHIR® standard.

The pilot project included four teams of health IT developers—Allscripts, Cerner, eClinicalWorks, and Epic—who built and tested the S4S FHIR® API. Then six healthcare provider organizations pilot-tested the API to enable participants to share EHR data with All of Us:

  • Cedars-Sinai Health System
  • Cerner Healthe Clinic
  • Duke University Health System
  • Partners HealthCare
  • Rush University Medical Center
  • University of Missouri Health Care

Participating in the pilot project enabled the provider organizations and health IT developers to demonstrate how EHRs can connect to All of Us more quickly and prepared them for adopting other apps based on HL7® FHIR® that are emerging on iOS, Android, and other mobile platforms.

Engaging New Developers and Enhancing the All of Us Platform

The Health Resources and Services Administration’s Advancing Precision Medicine funding has supported 46 health centers’ participation in All of Us. Building on the success of the pilot, ONC worked with health IT developer NextGen Healthcare to participate in S4S, as they and other developers support health centers in the Advancing Precision Medicine program.

Many All of Us participants join the program—and provide access to their EHR data—directly through provider organizations. However, individuals who are not receiving care at a participating organization or find it more convenient to join from another location can join as “direct volunteers.” All of Us will be leveraging S4S technology to accelerate participation and data sharing for these volunteers. This will be an important opportunity to learn more about enabling digital engagement, and the sharing of EHR data using different approaches, in a national research program.

Promoting Interoperability and Advancing Research

In the future, ONC plans to test additional data elements adopted as part of the U.S. Core Data for Interoperability, or USCDI, standard as part of S4S. Ultimately, the pilot results can benefit research participants, researchers, providers, and health IT developers by facilitating data sharing in a secure, efficient, and interoperable environment. The pilot also produced valuable lessons learned from testing relevant technologies and emerging standards to enable patient-directed data sharing for research. Electronic health data sharing is key to achieving the broader goals outlined in ONC’s National Health IT Priorities for Research: A Policy and Development Agenda, which aims to align the clinical and research ecosystems to make research faster, better, and easier and ensure that new knowledge is available at the point of care to improve outcomes.

Learn more about Sync for Science