The National Institutes of Health’s All of Us research program is seeking guidance on how best to acquire and integrate electronic health record (EHR) data from health information networks (HINs) and health information exchanges (HIEs) into the program’s data set.
Currently, more than 460,000 All of Us participants have consented to share EHR data. About half (55 percent) of these participants have their EHR data in the program’s data set so far. The program seeks to ensure that all participants who are willing to share EHR information can do so easily.
“Healthcare in the United States is highly fragmented, so patient data is often siloed in different systems, making it difficult to access. Lack of interoperability and evolving data standards contribute to additional gaps in our EHR data set,” said Chris Lunt, chief technology officer for the program, in a statement. “These gaps create barriers for realizing the full potential of the All of Us data to advance research, but we’re committed to addressing these challenges.”
During the consent process, participants are asked if they would like to share the data from their EHR. This HIPAA authorization covers all of a participant’s records, although the majority of the EHR data is shared through participants affiliated with one of 60 provider organizations in All of Us’ network. As the primary source of EHR data, the program has identified trends in missing data since enrollment sites may lack information on significant portions of a participant’s healthcare.
The program also uses a pilot approach to allow a subset of participants to provide additional data through online patient portals and Fast Healthcare Interoperability Resources (FHIR)-based connections. Using this method, nearly 8,000 participants contribute EHR data from a healthcare provider outside of the All of Us partner network, while another 1,400 contribute EHR data from two providers.
To date, HINs and HIEs have been most widely used to share EHR data for patient care, public health surveillance, emergency services, and patient requests, but they can be used for additional purposes with HIPAA authorization. Since All of Us participants who agree to share their EHR data sign a HIPAA authorization permitting holders of their EHRs to share their records with the program, HINs and HIEs could help broaden the availability of EHR data in the All of Us data set without requiring additional action by participants.
“All of Us is looking to pioneer new uses and approaches for health information exchanges that build off of the successes seen in clinical care and public health surveillance. In doing so, we hope to create a roadmap that other research programs can build on,” added Lunt.
A request for information outlines several areas of interest, including information about the general population coverage for HINs and HIEs, data elements required to match participants to the correct records, data elements available, quality issues, and potential limitations on the use of the data. Representatives of HINs or HIEs should respond based on the specific capabilities of their organization, whereas others should respond based on their industry knowledge or firsthand experience. Submissions will help inform the program’s consideration of alternative approaches to collecting EHR data in the future.
