The Sync for Science pilot, announced during the White House’s Precision Medicine Initiative Summit, has begun.
The National Institutes of Health (NIH), in collaboration with the Office of the National Coordinator for Health IT (ONC), are running the pilot that will enable individuals participating in a national cohort of one million Americans to access their health data and share it with researchers.
NIH, ONC and the Harvard Medical School Department of Biomedical Informatics will coordinate the implementation of the S4S pilot in collaboration with six EHR vendors—Allscripts, athenahealth, Cerner, drchrono, Epic and McKesson—which will pilot the use of open, standardized applications to give individuals the ability to easily and securely contribute their data to research.
The S4S Pilot intends to leverage HL7’s FHIR standard and OAuth security profiles. Many of the EHR vendors participating in the pilot already are involved in the Argonaut Project, an industry-wide effort to accelerate the development and adoption of FHIR.
Working with the EHR vendors is “a method to empower their healthcare provider customers, to facilitate research, to participate in the development of stronger healthcare systems and to meet EHR Incentive Program requirements for API-based patient access,” ONC’s Deputy National Coordinator Jon White, MD, wrote in a blog post. White envisions the vendor community working with their customers—provider organizations—to help recruit patient volunteers.
Harvard Medical School is in charge of technical coordination for the pilot, where research scientist Josh Mandel, MD, in the Harvard Medical School’s Department of Biomedical Informatics is leading the S4S coordination efforts.
S4S has two goals, according to White’s post: to develop methods to facilitate individually controlled data donations to the PMI cohort, as well as to accelerate and guide the national ecosystem for patient-mediated data access through APIs.
S4S will build on existing community standards and specification efforts (e.g., FHIR, SMART Health IT, Argonaut, CMS EHR Incentive Program) to support a key use case: giving patients an easy way to share their health data with researchers, he wrote. "This requires standards and specifications to support this use case, but the pilots aim not to define new standards and specifications. For this reason, the pilots will build on existing open community efforts."