Sync for Science - Patient-Driven Data Sharing to Promote Precision Medicine

Sync for Science-a collaboration between the National Institutes of Health, Office of the National Coordinator for Health IT, and Harvard Medical School-will allow patients to access their own health data, which they can then share with researchers involved in the initiative.

A year after the government announced the Precision Medicine Initiative (PMI), the Sync for Science (S4S) program—a collaboration between the National Institutes of Health (NIH), Office of the National Coordinator for Health IT (ONC), and Harvard Medical School—has opened up avenues for patient participation, allowing patients access to their own health data that they can then share with researchers involved in the initiative.

For the pilot programs to be launched soon, ONC, NIH, and the Harvard researchers expect to collect personal health data from over a million participants across the nation through a collaboration with electronic health record (EHR) developers (Allscripts, athenahealth, Cerner, drchrono, Epic, and McKesson). This HIPAA-compliant process plans to:

  • Develop methods to allow individually-controlled clinical data donation to the PMI cohort
  • Promote patient-mediated data access, something that CMS is working to achieve as well

This massive interoperability project is expected to allow a more personalized approach through patient participation, improve researcher access to basic clinical data, free provider staff time, and develop a much stronger knowledge base that will empower providers, research scientists, and ultimately the healthcare system.

Interoperability remains high on the governments list of healthcare priorities. At the recent annual meeting of the Health Information Management Systems Society, HHS Secretary Sylvia M. Burwell said, “Technology isn’t just one leg of our strategy to build a better healthcare system for our nation, it supports the entire effort. We are working to unlock healthcare data and information so that providers are better informed and patients and families can access their healthcare information, making them empowered, active participants in their own care.”

The S4S program does not plan to develop new standards; rather, they will build on existing open community efforts such as FHIR, SMART Health IT, Argonaut, and the CMS EHR Incentive Program. Of the million participants, 700,000 will be enrolled through their health providers, while the remaining 300,000 are expected to enroll independently through S4S.