Innovation in Health Information Networks to Propel Participant-Authorized Precision Medicine Research

2025 Informatics Summit On Demand

Presentation Time: 10:00 AM - 11:30 AM

Abstract Keywords: Clinical and Research Data Collection, Curation, Preservation, or Sharing, Data Quality, Data Sharing/Interoperability, Data Security and Privacy
Primary Track: Translation Bioinformatics/Precision Medicine
Programmatic Theme: Integrating Clinical Research and Clinical Care Workflows

The National Institutes of Health All of Us Research Program has launched an innovative pilot to inform U.S. healthcare interoperability leaders in translational science on the use of health information exchanges (HIEs) and health information networks (HINs) in participant-consented research studies. The panel will share perspectives on the technical and policy challenges of acquiring electronic health record (EHR) data for research by leveraging trust frameworks established to support other purposes. The team will compare its HIN/HIE data acquisition approach and data quality to typical data warehouse approaches. The pilot is a proximal use case to inform the use of the emerging Trusted Exchange Framework and Common Agreement (TEFCA) framework for research purposes. The panel will discuss challenges such as validation of the participant’s authorization to share EHR records, identity proofing, data restrictions in state laws, C-CDA and FHIR OMOP mapping, and exploration of novel implementations of FHIR.
Moderator:
Melissa Haendel, PhD
University of North Carolina

Moderator:
Melissa Haendel, PhD
CU Anschutz

Speaker(s):
Christopher Chute, MD DrPH
Johns Hopkins University

Jay Nakashima
eHealth Exchange

William Hogan, MD
Medical College of Wisconsin

Josh Lemieux, BA
OCHIN

Author(s):
Melissa Haendel, PhD - University of North Carolina; Lew Berman, PhD, MS - National Institutes of Health Office of the Director / All of Us Research Program; Jay Nakashima - eHealth Exchange; William Hogan, MD - Medical College of Wisconsin; Brian Gugerty, DNS - National Center for Health Statistics;