Civitas Networks for Health® is a national collaborative of member organizations working to use health information exchange, health data, and multi-stakeholder, cross-sector approaches to improve health. We were in Anaheim, California, this year for the Civitas Networks for Health 2025 Annual Conference. Join us as we recap selected sessions from this year’s events!
Tuesday, September 30, 2025
The National Institute of Health’s (NIH) “All of Us” research program aims to accelerate health research and medical breakthroughs by collecting health data from 840,000 participants. In 2024, the NIH selected three pilot sites—a Health Information Exchange (HIE), a health system, and a network of providers—to test individually authorized data sharing, focusing on HIEs that supplement data collection efforts and support the Access Consent Policy workflow.
The NIH also funded the new Center for Linkage and Acquisition of Data (CLAD) to acquire comprehensive data, including historical claims, social, and environmental factors, with proper authorization. eHealth Exchange (eHX) serves as a national health information network for data exchange and requires specific consent for “All of Us” data movement, typically through signed PDFs granting providers and HIEs permission to disclose patient information. A “Purpose of Use” code tracks disclosure reasons, with the program utilizing HIPAA authorization forms.
HIEs have been crucial in filling data gaps where NIH’s collected data may not encompass all providers and repositories. eHX integrates with TEFCA and Carequality, with plans to query these networks in the future. The program also supports FHIR for querying record details, using a hybrid approach of traditional IHE profiles (SOAP) to push signed consent PDFs, followed by FHIR queries.
Manifest MedEx (MX) contributed nearly 17,000 records of supplemental data not previously in the NIH database, demonstrating the added value of HIE data for research. Cedars-Sinai, a regional recruitment center, also provided additional data, though challenges included “break the glass” protections and difficulties mapping diverse data. This pilot highlighted the benefits of using existing network agreements for data acquisition but underscored the need for standardized mapping tools to reduce costs.
Future plans from NIH’s perspective include expanding the pilot to more provider and HIE partners, refining response methods, and exploring TEFCA for network-to-network research. The program also considers supporting follow-up and surveillance for trials requiring FDA review, assuming consent is in place.
The “All of Us” workbench uses a passport approach to access, with policies stating that once a participating researcher is credentialed, they can work on any hypothesis and any interrogation. The data is de-identified.
The Q&A portion of the session informed attendees that all participants in this program are volunteers who can opt out at any time (recruitment of underrepresented populations has been successful), but organizers have seen good retention rates so far. The program recently changed platform vendors and expects to roll out new functionality soon.
While additional research questions will be pursued, the primary research question for this pilot was whether HIE-contributed data improved research data. There is a collaboration between CLAD and Vanderbilt to work through details, such as mapping to OMOP and resolving duplicate-record questions.
The origin and provenance of data are also key considerations to bolster the value of HIEs in enhancing research data. While genomic data is not currently collected by MX or CLAD, Cedars-Sinai may begin capturing it later.
