Chicago Area Patient Centered Outcomes Research Network: A PCORI-funded initiative to build a network for comparative effectiveness 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.
Learning Areas:Public health or related research
Describe the Chicago area clinical research network funded by PCORI. Discuss opportunities to work with CAPriCORN. Identify key partners and collaborators in CAPriCORN.
Keyword(s): Patient-Centered Care, Information Technology
Qualified on the content I am responsible for because: I have been a principal investigator on multiple federally funded grants focusing on patient outcomes and use of administrative data. Among my scientific interests is the improving the delivery of patient centered care and use of new care delivery models.
Any relevant financial relationships? No
I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.