Data and Research Support Center Linkage Pilot

Northwestern University (NU) will serve as an arm of Data Resource Center (DRC) and contribute the scientific expertise of our team of investigators. Relevant to this project, Dr. Kho has deep and practical experience in privacy protecting record linkage applied specifically to understanding the fragmented nature of EHR data. He has worked extensively with Dr. Joshua Denny as part of the eMERGE consortium, Chairs the EHR committee for the All of Us Research Program, and leads the Record Linkage Workgroup for PCORnet. His group has successfully implemented a privacy preserving record linkage tool to link records for over 5 million patients across the Chicagoland region, which is also now in use in several other States. Specifically, the NU team will: - Lead development and implementation of a process to identify the degree and specific distribution of cross-institutional participant records for the All of Us Research program within a pilot group of Health Provider Organizations. Following a model already implemented in Illinois Precision Medicine sites, this may involve use of privacy preserving record linkage tools (both deterministic and probabilistic) or other master patient index method to enable cross site data linkage, without the need to share any Protected Health Information (PHI). - Extend identification of fragmented EHR data to also include a process by which sites will be notified which consented participant records, in addition to those recruited by their site, should also be sent to the DRC. - Lead project meetings, technology calls/meeting and provide guidance in person or via email as needed over the course of the study. - Participate in the development of publications which may result from this work. An expected outcome of this pilot is: 1) Identification of the degree to which EHR data may be scattered across participating institutions. 2) Development and testing of a process to notify participating institutions what additional EHR data should be sent to the DRC.