Electronic health records are a critical piece of the massive dataset that the National Institutes of Health intends to gather from a national cohort of 1 million or more Americans, as part of the Precision Medicine Initiative’s All of Us research program.
In particular, longitudinal tracking of health outcomes through EHRs is vital to the effort. However, tapping into disparate EHRs from a wide range of healthcare provider organizations (HPOs) across the country is a significant challenge for NIH, according to Joni Rutter, director of scientific programs for the All of Us research program.
“To enable electronic health records to be shared with researchers has been a difficult task,” Rutter told the annual meeting of the Office of the National Coordinator for HIT on Friday in Washington.
Nonetheless, she said NIH is building a national network of HPOs that will help enroll PMI cohort participants, as well as gather their medical records, health data and biospecimens. The agency is looking to leverage EHRs at various HPOs, including regional and national medical centers, community health centers, and those operated by the Department of Veterans Affairs.
HPOs will “do a better job being able to provide the electronic health records to us through their provider networks,” Rutter contends. To facilitate EHR sharing, she said the All of Us research program will use the Observational Medical Outcomes Partnership (OMOP) version 5 common data model, and create an informatics infrastructure to clean and standardize data from disparate EHR systems across the United States.
The Vanderbilt University Medical Center was awarded a five-year, $71.6 million grant from NIH to establish and operate a Data and Research Support Center (DRC) for the All of Us research program. Through a consenting process, participants will be asked to authorize linkage of their EHR data, which will be sent directly by the participant’s HPO to the DRC.
For participants enrolled by HPOs, the sites will extract data from the participant’s EHR, format it according to the DRC’s data model and transfer it to the DRC using secure protocols. The concept behind this approach is to transform data contained within those databases into a common format (data model) as well as a common representation (terminologies, vocabularies and coding schemes).
In the future, Rutter said study participants will be able to share their EHR data with the DRC via Sync for Science (S4S), a project coordinated by Harvard Medical School’s Department of Biomedical Informatics, NIH and ONC, which is leveraging HL7’s Fast Healthcare Interoperability Resources (FHIR) standard and OAuth 2.0 authorization in support of All of Us research program.
Also See: Apps to enable patients to access their EHRs, share with researchers
S4S is an attempt to create a secure application program interface (API) that makes it easy and safe for people to securely share their EHR data with researchers. Major EHR vendors, including Allscripts, Cerner, eClinicalWorks and Epic, are piloting the use of open, standardized applications to give individuals the ability to easily and securely contribute their clinical data to medical studies.
All of Us participants who have enrolled at a pilot site will be able to sign into their healthcare provider’s patient portal using the S4S workflow and authorize sharing their EHR data with the research program.
“We’re setting up pilots early next year around the country,” according to Rutter, who adds that “Sync for Science really has the ability to scale.” However, Rutter concluded that S4S “needs to be tested before we go in full throttle.”
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