- The Office of the National Coordinator for Health Information Technology (ONC) and National Institutes for Health (NIH) are moving forward with a joint pilot program to enable patient access to health information through the use of application programming interfaces (APIs), members of the two federal agencies said earlier this week.
ONC and NIH unveiled the Sync for Science (S4S) pilot late last month, an effort to support the sharing of EHR data with the Precision Medicine Initiative launched by the White House in 2015. These EHR data donations are integral to the PMI Cohort Program, which was allocated $130 million with the purpose of building a sizeable, nationwide research participant group.
The NIH overview of the program emphasizes the importance of establishing a PMI cohort now:
Many factors have converged to make now the right time to begin a program of this scale and scope — Americans are engaging in improving their health and participating in health research more than ever before, electronic health records have been widely adopted, genomic analysis costs have dropped significantly, data science has become increasingly sophisticated, and health technologies have become mobile.
A key participant in the S4S is the Harvard Medical School Department of Biomedical Informatics, which was given the task of helping coordinate the of the S4S pilot in collaboration with EHR vendors Allscripts, athenahealth, Cerner, drchrono, Epic Systems, and McKesson.
The description of the award to Harvard spells out its responsibilities pertaining to the pilot:
To ensure that direct volunteers can easily share their electronic health record (EHR) data for research purposes, the awardee will work with NIH, ONC, and a group of six committed EHR vendors to design, build, test, and pilot implementations of a platform based on open standards including FHIR, OAuth 2.0, and OpenID Connect, as profiled by SMART Health IT. The platform will allow a PMI participant using a PMI web or mobile app to indicate who holds their EHR, determine the provider’s system parameters, connect to the system, authenticate a provider-hosted portal and approval to access and donate data for research using a FHIR interface with standardized data profiles.
The awardee will build and test and open source sample application to demonstrate authorization flow, set up an open-source reference implementation on the EHR side of the platform (working with committed vendors), and define and refine API expectations for search and retrieval and data standards. The awardee also proposes to develop principles for a common user experience, convene vendors to address implementation issues, iteratively test these implementations, and publish documentation for all APIs, user experience expectations, and reference tools.
Writing on the official ONC blog, Health IT Buzz, representatives from ONC, NIH, and Harvard have provided insight into the earliest phase of the S4S pilot.
"The initial focus of the S4S pilot will be a core data set that includes medications, problem lists, and demographics as defined in ONC’s Common Clinical Data Set definition. ONC and NIH expect that future phases of S4S will support methods for sharing other data elements," write ONC Deputy National Coordinator Jon White, MD, PMI Cohort Program Interim Director Josephine Briggs, MD, and Harvard Medical School Department of Biomedical Informatics Research Scientist Josh Mandel, MD.
The trio also provided details about the benefits of the pilot for various stakeholders:
Research Participants: An easier way of contributing to scientific progress and sharing medical records with researchers that doesn’t require faxed forms, delays, or in-person visits.
Researchers: A simple path to receive research participants’ basic clinical data, including essential details like lab results, vital signs, problem lists, medications, and immunizations, potentially increasing participation in studies. Data delivered in a structured format with standard vocabularies may also need less “cleanup” than typical EHR data.
Providers: A way to give patients access to the potential benefit from participating in research studies and a reduction in staff time to support data requests, as they flow automatically through our vendor-supplied patient portal.
EHR Vendors: A method to empower their health care provider customers, to facilitate research, to participate in the development of stronger health care systems, and to meet EHR Incentive Program requirements for API-based patient access.
What's more, the S4S pilot has an overarching goal of working in concert with other efforts to advance EHR interoperability, namely the development of Fast Healthcare Interoperability Resources (FHIR), the Argonaut Project, and the EHR Incentive Programs.
"Under the hood, the S4S Pilot will use HL7’s FHIR specifications for data models and a REST API and SMART Health IT OAuth profiles for security. Our initial scope of data access and the vocabularies we use are aligned with the Common Clinical Data Set," the three write. "Many S4S vendors and providers are also participating in the Argonaut Project, which is an ecosystem-wide effort to support the implementation of these same open specifications. S4S will leverage the work conducted by Argonaut, so participating vendors will be able to leverage those efforts for S4S."
The S4S award runs from March 1, 2016 through Feb. 28, 2017, and EHR vendors and providers still have the opportunity to sign on as pilot sites.