Collect Once, Use Many: Building a Federated Health Learning Infrastructure to Modernize Research and Public Health

Presentation Type: Panel
Presentation Time: 03:30 PM - 04:45 PM

Abstract Keywords: Data Transformation/ETL, Real-World Evidence Generation, Data Sharing, Interoperability and Health Information Exchange
Programmatic Theme: Clinical Informatics

The U.S. health data ecosystem is fragmented: the same institutions repeatedly collect and format overlapping datasets for different programs, creating silos, burdening providers, and degrading data quality. The Data Collect ™ Once Use Numerous TimeS (Data COUNTS) initiative is developing a federated EHR data collection and transmission architecture built on open industry interoperability standards, so that data can be collected once and reused disease surveillance, and biomedical research. This panel presents four perspectives on the initiative: an overview of Data COUNTS' goals and how it enhances NIH data programs; use cases spanning cancer registry modernization and chronic diseases; alignment with the NIH's real-world data strategy and HHS priorities; and a forward-looking discussion of how the initiative toward a national learning health data ecosystem. Attendees will learn design choices for provenance-preserving federated architectures, scaling requirements and institutional burden tradeoffs, and governance and trust models for sustainable multi-agency reuse.

Moderator:
Shannon Silkensen, PhD
National Cancer Institute

Speaker(s):
Russell McCulloh, MD
University of Nebraska Medical Center
Susan Gregurick, PhD
National Institutes of Health
Eric Durbin, DrPH
University of Kentucky
Joni Rutter
NIH
Author(s):
Shannon Silkensen, PhD - National Cancer Institute; Susan Gregurick, PhD - National Institutes of Health;

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