University of California Research eXchange (UCReX): A Federated Cohort Discovery System

摘要

The University of California has committed to the development of a system to encourage collaboration among its 5 Medical Center campuses. (UC Davis, UC San Francisco, UC Los Angeles, UC Irvine, UC San Diego). The name of this system is UC-ReX, for the UC Research eXchange. A key component of this system is a tool that identifies cohorts of research participants across campuses. Each campus has established an instance of i2b2 (Informatics for Integrating Biology and Bedside) onsite. The use of SHRINE (Shared Health Information Network) technology enables the propagation of federated queries across instances of i2b2. UC-ReX is (presently) a SHRINE network. By leveraging i2b2 and SHRINE technologies across participating academic medical centers, the University of California system has stood up a resource that allows access to the de©identified records of over 12 million patients across the state. This project provides a governance structure, infrastructure, and front end that enables research teams to validate the existence and size of potential research cohorts through a user friendly UI while eliminating the possible exposure of Protected Health Information (PHI). We discuss the technology that allows sharing of de-identified information among the independently operated medical centers, with multiple electronic medical record systems, in the UC-ReX network, the mechanisms by which these tools were implemented, the security model that drives the network infrastructure setup, and present the resulting network infrastructure as the model is brought into practice. Ultimately this project allows a researcher with the appropriate authorization, access to a grand total of 12.4 million patients with an estimated number of approximately 175 million observa