Pilot to recruit patients to share EHR data with researchers
A pilot leveraging HL7’s emerging Fast Healthcare Interoperability Resources (FHIR) standard and OAuth 2.0 security profiles to enable patients to access their electronic health record data and share it with researchers will get underway later this month.
Four major EHR vendors—Allscripts, Cerner, eClinicalWorks and Epic—have put the technology into production and made it available at 13 healthcare provider sites across the country for use by a total of 1,300 patients as part of the pilot.
Putting patients at the center of deciding when and how EHR data should flow is the goal of the Sync for Science (S4S) pilot, coordinated by Harvard Medical School’s Department of Biomedical Informatics, the National Institutes of Health and the Office of the National Coordinator for HIT.
S4S is meant to provide a streamlined user experience for donating data from any EHR system by leveraging two open standards: FHIR to represent clinical data and OAuth 2.0 for authorization. Each of the four vendors supporting these standards has a place in their respective patient portals where patients can sign in and make the decision to either share data or revoke sharing.
“With the click of a button, you can share your health data with a research app of your choice or with a research study that you want to support,” said Josh Mandel, MD, health IT ecosystem lead at Verily, during an education session on Thursday at the HIMSS18 conference in Las Vegas. “What we really want is an electronic workflow that helps patients opt in to this kind of data sharing in a very explicit way and in a low friction way.”
S4S is supporting the NIH Precision Medicine Initiative’s All of Us research program, whose goal is to recruit one million or more Americans to participate in a national cohort and contribute their health information including EHR data. However, S4S is creating a patient-mediated digital workflow that will potentially benefit other research programs and broader data sharing use cases, contends Mandel.
“The big picture in this pilot is we’re working with the All of Us research program—they’ve got a consumer app that they’ve built,” he said.
According to Mandel, his team hopes to learn from the S4S pilot “how easily consumers get through this workflow and if there’s any places they get stuck either for technical reasons or for social reasons.”
Mandel, who has been working on the project with a team at Harvard Medical School since 2016, noted that the initial focus of S4S is on ONC’s Common Clinical Data Set which includes a list of elements such as demographics, immunizations, lab results, medications, problem lists, and vital signs. He added that future phases of S4S will offer methods for sharing other data types, including financial and imaging data.