All of Us Research Program Issues RFI for EHR Data Collection from HIEs

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 integrate EHR data from health information networks (HINs) and health information exchanges (HIEs) into the program’s dataset.

Over 460,000 program participants have consented to share EHR data. About half (55 percent) of these participants have their EHR data in the program’s dataset.

“Healthcare in the United States is highly fragmented, so patient data is often siloed in different systems, making it difficult to access,” Chris Lunt, chief technology officer of the All of Us Research Program, said in a press release. “Lack of interoperability and evolving data standards contribute to additional gaps in our EHR dataset.”

“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,” Lunt continued.

During the All of Us consent process, NIH asks participants if they want to share their EHR data. This HIPAA authorization covers all of a participant’s records. However, most EHR data is transferred through participants affiliated with one of 60 healthcare provider organizations in the network.

The program has identified trends in incomplete data since enrollment sites may lack information on significant portions of a participant’s healthcare.

All of Us 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 the All of Us partner network, while another 1,400 contribute EHR data from two providers.

Since All of Us participants who agree to share their EHR data sign a HIPAA authorization, HINs and HIEs could help broaden the availability of EHR data in the All of Us dataset without requiring additional action.

“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,” said Lunt. “In doing so, we hope to create a roadmap that other research programs can build on.”

The RFI outlines areas of interest, such as information about the general population coverage for HINs and HIEs, data elements required for patient matching, and potential limitations on the use of the data.

Representatives of HINs or HIEs should respond based on the specific capabilities of their organization, while others should respond based on their industry knowledge.

Submissions will help inform the program’s consideration of alternative approaches to EHR data collection. NIH will accept responses to the RFI through August 31, 2022.