NIH and ONC announce Sync for Science to enable patients to donate data to Precision Medicine Initiative
The National Institutes of Health and the Office of the National Coordinator for Health IT have launched Sync for Science, a pilot to allow individuals to send their health data to researchers with the Precision Medicine Initiative.
The S4S pilot – coordinated by NIH and ONC alongside the Harvard Medical School Department of Biomedical Informatics – will be key to helping the Precision Medicine Initiative Cohort Program reach its goal of including one million U.S. participants.
Key to S4S' success, meanwhile, will be the electronic health record vendors taking part in the project: Allscripts, athenahealth, Cerner, drchrono, Epic and McKesson.
The vendors will implement a "consistent, standards-based workflow," building on open specifications such as OAuth and HL7's FHIR protocol, according to a blog post co-written by Deputy National Coordinator Jon White, MD; Josephine Briggs MD, interim director of the PMI Cohort Program; and Josh Mandel MD, research scientist at Harvard Medical School.
"Once developed and implemented, this functionality will allow individuals to connect a research app to their electronic health data, facilitating individual data donation for research and leveraging patients’ access rights under HIPAA," they wrote. "The pilots will also collect information on individual participant preferences on alternative approaches for data donation."
S4S pilot has two goals: Make it easier for patients to share clinical data with the PMI Cohort in a structured electronic format, and build up a national ecosystem for patient-mediated data access through APIs.
Stage 3 meaningful use requires APIs, for instance, and White said the S4S pilot offers insight into how that requirement could play out across the market.
ONC and NIH are hoping that the APIs developed as part of the S4S Pilot will offer research participants easier ways of sharing medical records; researchers an easier path to receive basic clinical data; providers a way to improve patient engagement, and vendors new ways to help their customers meet meaningful use requirements for for API-based patient access.
ONC said EHR vendors should join Argonaut’s free, open Implementation Program to get involved in S4S. The agency also encouraged providers whose vendors are participating in S4S to offer to serve as a pilot site.