Many All of Us participants share electronic health record data for researchers’ use
Request for Information looks for guidance on how to acquire and integrate data from health information networks and health information exchanges
The National Institutes of Health’s All of Us Research Program has issued a Request for Information (RFI) to seek 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 dataset. Currently, more than 460,000 All of Us participants have consented to share EHRs. About half (55%) of these participants have their EHR data in the program’s dataset so far. The program seeks to ensure that all participants who are willing to share EHR information can do so easily.
“Health care 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 dataset,” said Chris Lunt, chief technology officer, All of Us Research Program. “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 All of Us consent process, participants are asked if they would like to share their EHRs. 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 health care provider organizations in All of Us’ network. As the primary source of EHR data, the program has identified trends in data missingness since enrollment sites may lack information on significant portions of a participant’s health care.
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. FHIR is a standard that defines how health care data can be securely shared electronically between different EHRs and providers. Using this method, nearly 8,000 participants contribute EHR data from a health care 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 dataset 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,” said Lunt.
The RFI 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.
Responses to the RFI will be accepted through August 31, 2022. All RFI responses must be submitted electronically through the Web Portal at: https://rfi.grants.nih.gov/?s=62cd7e699a2a000079006a12. Questions about the RFI can be submitted to AoURFIs@od.nih.gov. Please include “RFI Question: HIN and HIE for the All of Us Research Program” in the subject line of the email.
To learn more, view the full RFI on Acquiring Electronic Health Record Data from Health Information Networks and Health Information Exchanges for the All of Us Research Program.
All of Us is a registered service mark of the U.S. Department of Health & Human Services (HHS).
