CAPriCORN: Chicago Area Patient-Centered Outcomes Research Network

Abstract

The Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN) represents an unprecedented collaboration across diverse healthcare institutions including private, county, and state hospitals and health systems, a consortium of Federally Qualified Health Centers, and two Department of Veterans Affairs hospitals. CAPriCORN builds on the strengths of our institutions to develop a cross-cutting infrastructure for sustainable and patient-centered comparative effectiveness research in Chicago. Unique aspects include collaboration with the University HealthSystem Consortium to aggregate data across sites, a centralized communication center to integrate patient recruitment with the data infrastructure, and a centralized institutional review board to ensure a strong and efficient human subject protection program. With coordination by the Chicago Community Trust and the Illinois Medical District Commission, CAPriCORN will model how healthcare institutions can overcome barriers of data integration, marketplace competition, and care fragmentation to develop, test, and implement strategies to improve care for diverse populations and reduce health disparities.

Keywords: Clinical Data Network; Outcomes Research; Patient Centered.

Figure 1

Overview of infrastructure and data flow. All participating sites will use a common data model. Distributed queries managed using PopMedNet, with distributed patient IDs (Hash-IDs) assigned using existing HealthLNK software. Deidentified data stored separately from identified data to accommodate different data use cases, and access managed by a central institutional review board (IRB).

Figure 2

Process flow of the Communication Center. The Communication Center acts as a key interface between the CAPriCORN (Chicago Area Patient-Centered Outcomes Research Network) Data Hub and on-site primary research data collection.