Project Summary
The Chicago Area Patient-Centered Outcomes Research Network (CAPriCORN) is an unprecedented collaboration with a mission to develop, test, and implement strategies to impact healthcare quality, health outcomes, and health equity for diverse residents in the metropolitan Chicago region and the nation. Within the Chicago metropolitan area, CAPriCORN seeks to address the needs of an estimated 9.5 million residents, including groups that experience significant health inequities partly due to variable access to high-quality care. Nationally, as a clinical data research network (CDRN), CAPriCORN is able to contribute data and expertise to strengthen the capacity of PCORnet to engage in sustainable, populationwide, and patient-centered outcomes research.
CAPriCORN is convened by the Chicago Community Trust with administrative support from the Illinois Medical District Commission and central technical infrastructure support from the Medical Research Analytics and Informatics Alliance. CAPriCORN includes a diverse group of private, county, state, and federal health systems; a consortium of federally qualified health centers; and other partners.
CAPriCORN is an engaged partner in PCORnet and has participated in the development of PCORnet demonstration projects. CAPriCORN will continue to nurture high-quality, high-impact collaborations with other CDRNs and patient-powered research networks.
Highly innovative from its inception, CAPriCORN has involved patients, clinicians, health system leaders, scientists, and other key stakeholders at every stage of the research and governance process. Also, CAPriCORN has developed an adaptable common data model and a master data protocol to longitudinally characterize over 1 million patients. In order to support comparative effectiveness research, CAPriCORN has established the regional Chicago Area Institutional Review Board and developed protocols for five cohorts: weight, asthma, anemia, recurrent clostridium difficile infection, and sickle cell disease.
Through shared decision making, CAPriCORN will implement innovative methods to transition healthcare systems into learning health systems. CAPriCORN is well-positioned to achieve Phase II CDRN goals of:
- engaging stakeholders in governance and research;
- expanding an analysis-ready, standardized data set while protecting privacy and data security;
- embedding clinical trials in network care delivery systems;
- building public trust in research;
- attracting diverse users of network resources; and
- creating a sustainable network.
CAPriCORN will accelerate its capabilities to process preparatory-to-research queries and conduct observational studies in addition to streamlining the conduct of clinical trials and health system research. In summary, CAPriCORN will mature into a sustainable CDRN supporting high-quality patient-centered outcomes research into the future.
View Phase I Award
View more about this project on PCORnet.org.
Richesson R, Sun J, Pathak J, Kho A, Denny J. A survey of clinical phenotyping in selected national networks: demonstrating the need for high-throughput, portable, and computational methods. Artificial Intelligence in Medicine , Volume 71, 57 – 61. (Abstract only available)
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