As part of the Obama administration’s Precision Medicine Initiative, the National Institutes of Health—in collaboration with the Office of the National Coordinator for Health IT—has initiated a pilot called Sync for Science (S4S) 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 electronic health record 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 will leverage HL7’s emerging Fast Healthcare Interoperability Resources (FHIR) standard, an interoperability framework that makes use of the latest web standards, and OAuth security profiles. Many of the EHR vendors participating in the pilot are already involved in the Argonaut Project, an industry-wide effort to accelerate the development and adoption of FHIR.

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 effort.

“We’ll be working with the six committed EHR vendors to ensure they have consistent S4S implementations, and to make sure that we have a consumer-friendly end-to-end workflow,” says Mandel.

“We’ll be building on existing standards, rather than designing new or custom specifications. Specifically, we’re looking at S4S as a prime use case for the SMART on FHIR specifications, which the Argonaut group is actively piloting already,” he adds. “SMART’s specifications are designed to allow a user to approve a health app to access clinical data. In the case of S4S, the user is a patient who wants to donate their data to research; and the app is a research tool designed to help collect data.”

Developed with funding from ONC, SMART (or Substitutable Medical Applications and Reusable Technologies) leverages HL7’s emerging FHIR standard to make it as easy as possible for app developers to get to data and for EHR vendors to implement a common application programming interface (API). Mandel, a software engineer and lead architect for SMART on FHIR and also a lead on the Argonaut Project, adds that “we’re still getting things kicked off” and will soon have a “better sense of scope and EHR vendor involvement.”

ONC’s Deputy National Coordinator Jon White, MD, says that a critical piece of the pilot is joining forces with a half dozen leading health IT vendors and leveraging the industry’s work over the last few years in the development of open APIs. Specifically, White sees the vendor community working with their customers—provider organizations—to help recruit patients to volunteer to share their data for the PMI cohort, with the appropriate permissions and privacy protections in place.

According to White, S4S has two goals: to develop methods to facilitate individually controlled data donations to the PMI cohort, as well as to accelerate/guide the national ecosystem for patient-mediated data access through APIs.

“In the drive towards interoperability, we have recognized that APIs are going to be our technical approach to making the healthcare system interoperable,” adds White. “FHIR is a great example of the industry rising to meet our direction for an industry-wide approach to open, standardized APIs in healthcare.”

However, Micky Tripathi, CEO of the Massachusetts eHealth Collaborative and manager of the Argonaut Project, says that a big concern with FHIR right now is that it may become a victim of its own success.

“There are many new initiatives sprouting from the government and in the market—and all want to leverage FHIR, which is still a standard in its infancy,” observes Tripathi. “If we’re not careful and judicious, we’ll have the same problem as we have with HL7 v2 – a ‘standard’ with a million variants. Basing S4S and other key FHIR initiatives on the Argonaut Project will help to head off the temptation to create competing flavors of FHIR.”

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