Sync for Science helping patients share EHRs with researchers
In the not-too-distant future, patients will be able donate their electronic health record data to a research program of their choice with just a few clicks of a button.
That’s the vision for Sync for Science (S4S), a project 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 leveraging HL7’s Fast Healthcare Interoperability Resources (FHIR) standard and OAuth 2.0 authorization in support of the NIH Precision Medicine Initiative’s All of Us research program.
The goal of All of Us 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.
“Any research study should be able to use this technology,” said Josh Mandel, MD, health IT ecosystem lead at Verily, who has been working on S4S for the past year and a half with a team at Harvard Medical School. “If you’re a researcher and you’re building a study and you want EHR data, you should be able to build an app that asks for permission.”
Mandel told a session on Monday at the 2017 American Medical Informatics Association Annual Symposium in Washington that about two-thirds of the All of Us program’s participants will come from provider organizations that are funded by NIH to recruit volunteers, while one-third will come from direct volunteers. “Sync for Science is in many ways about helping those direct volunteers to share their data,” he added.
Driving this effort are two government mandates: a HIPAA requirement that patients must be able to access their own EHR data, and Meaningful Use Stage 3 and the 2015 Edition Health IT Certification programs, which require that patients be able to share a Common Clinical Data Set with apps of their choice.
“We’ve been excited to work with a critical mass of the vendor community on a consistent standards-based way to do that sharing,” said Mandel. “What we see is that vendors are very willing to implement support for things that are in those regulations.”
Major EHR vendors—including Allscripts, Cerner, eClinicalWorks and Epic—are “implementing this technology in the real world (by) building out support for this system of sharing data into their production patient portals” at more than a dozen pilot healthcare sites around the country. Using the OAuth security standard, a patient’s in-portal approval causes the provider EHR to generate an access token that the app uses to retrieve clinical data.
“Patients sign in using their regular portal user name and password, and they are presented with an approval screen that asks whether they in fact want to share their data with this particular app—in this case, it’s the All of Us research app, but it could be any research app,” Mandel observed.
According to Mandel, as many as 2,000 participants will be invited to join the program by using the All of Us research app to self-enroll, to consent to the use of their EHR data and—using the portal-based S4S workflow—to instruct their provider to share data with the app.
“The provider system may give a patient the opportunity to review specific details like whose record is being shared, where the data is coming from, where is it going to and how long it should be shared for,” he noted. “And the provider system may give the patient an opportunity to restrict which kinds of data will be shared—this is entirely up to the vendors.”