Chicago Area Patient Centered Outcomes Research Network: A PCORI-funded initiative to build a network for comparative effectiveness research

background.   PCORI funded 11 clinical data research networks to use real time and real world data to conduct studies to address questions that matter to patients and generate answers faster than traditional research. 

objective/purpose.  The Chicago Area Patient Centered Outcomes Research Network (CAPriCORN) is a groundbreaking initiative in which 11 area healthcare institutions established a distributed data network to conduct comparative effectiveness studies. 

methods.  CAPriCORN utilizes a distributed query system to quickly identify and characterize patient cohorts for research.  We developed a privacy protecting record linkage system to create unique patient IDs, allowing us to remove PHI so only de-identified data are used for analysis.  We have developed EHR-based phenotype definitions for three common cohorts:  an obesity/weight cohort, asthma, anemia; and two rare diseases: sickle cell disease (SCD) and recurrent clostridium difficile infection (RCDI).

results.  Preliminary work identified 1.46 million patients with primary care visits in the past year.  These patients are 47.5% white, 27.9% black and 14.9% Hispanic; 40.7% are male and mean age is 50 years (sd=17.9).  Approximately 65,000 patients with asthma, 237,000 who met obesity criteria, 121,000 with anemia, 3800 with RCDI and 1400 with SCD were identified.  We established a centralized institutional review board to facilitate proposal reviews, and a patient and clinician advisory committee (PCAC) to ensure that patient engagement is foremost in our research.  CAPriCORN is participating in the FDA-supported Sentinel project and has been approached by several external investigators to collaborate on proposals.  CAPriCORN also will participate in PCORI-supported studies including a trial of aspirin doses and cardiovascular risk.

discussion/conclusions:  CAPriCORN enables multiple clinical studies with diverse patient and provider populations in the Chicago area.  We have established a business model in which infrastructure is shared among institutions and governance includes a neutral convener and a steering committee to oversee activities and decisions.