Chicago is the third most populous city in the US and, together with its metropolitan area, includes about 9.5 million residents. Chicago suffers from significant health disparities due to variable access to high-quality care and differences in socioeconomic resources across its metropolitan area. With the support of city, county, and state-level governments (see letters of support), we have proposed an unprecedented collaboration across a diverse group of healthcare institutions, including private, county, and state hospitals and health systems, a consortium of federally qualified health centers, two Veterans Administration Hospitals, and other partners to develop the Chicago Area Patient-Centered Clinical Outcomes Research Network (CAPriCORN).
Over the course of the 18-month project period, the CAPriCORN CDRN will have captured complete longitudinal clinical information in more than 1 million patients (~50% nonwhite); developed the capacity to efficiently conduct comparative effectiveness research (CER) trials and observational studies, including a fully operational central IRB; established procedures for clinical data standardization and inter-operability across the national patient-centered research network of clinical data research networks (CDRNs) and patient-powered research networks (PPRNs); engaged patients, clinicians, and health system leaderships in governance and use of CAPriCORN resources; and recruited and surveyed five cohorts (two cohorts representing common condition, two cohorts representing rare conditions, and an obese/overweight cohort). These cohorts were selected on the basis of nationally prominent research expertise among the member institutions and because several of them are especially representative of conditions noted for health disparities. With coordination by the Chicago Community Trust and the Illinois Medical District Commission, and a participatory and nimble governance structure, CAPriCORN will seek to model how healthcare institutions in complex urban settings can overcome barriers of competition, care fragmentation, and limited resources to develop, test, and implement strategies to improve care for diverse populations and reduce health disparities. The diverse healthcare settings and populations within CAPriCORN will also serve as a natural laboratory in which we can examine and learn to address the heterogeneity of treatment effects.
Our overall strategy is to build upon the strengths of our participating institutions and existing collaborations to develop a cross-cutting infrastructure for sustainable, population-wide and patient-centered CER in Chicago. In preparation for this proposal, we successfully pooled EHR data across seven of the nine CAPriCORN institutions to identify over 5 million unique patients and potential study patients for all five study cohorts as part of our ongoing Chicago Health Atlas project. Five of the CAPriCORN institutions already collaborate with the Chicago-based University HealthSystem Consortium (UHC), an alliance of 119 nonprofit academic medical centers, over 300 affiliated hospitals, and nearly 100 faculty practice plans. UHC will expand its role to serve as a data aggregator for all CAPriCORN sites. This partnership with UHC greatly enhances CAPriCORN's ability to develop a CDRN within the project period and to serve as part of a sustainable national model for PCORI, while creating a model that could later add other UHC institutions. Several of the member institutions in CAPriCORN have also participated in local and national research collaboratives, including the NIH NCATS Clinical and Translational Science Centers, Agency for Healthcare Research and Quality (AHRQ)/National Institutes of Health (NIH) Heart, Lung and Blood Institute CONCERT, AHRQ-funded comparative Centers for Education and Research in Therapeutics (CERTs) and effectiveness trial in asthma (BELT study), and the NIH and CMMI-funded LEARN demonstration project. We have also established strategies to involve patients and clinicians at every stage of the research process, from soliciting research topics and prioritization, to assisting in the design and execution of CER studies, and dissemination of study results (e.g., PCORI-funded PArTNER and PELICAN trials). CAPriCORN stands ready to improve the nation's capacity to conduct CER efficiently and contribute to the national patient-centered research network.