Patient-Centered Outcomes Research in Practice: The CAPriCORN Infrastructure.

RAND Corporation. Abstract CAPriCORN, the Chicago Area Patient Centered Outcomes Research Network, is one of the eleven PCORI-funded Clinical Data Research Networks. A collaboration of six academic medical centers, a Chicago public hospital, two VA hospitals and a network of federally qualified health centers, CAPriCORN addresses the needs of a diverse community and overlapping populations. To capture complete medical records without compromising patient privacy and confidentiality, the network created policies and mechanisms for patient consultation, central IRB approval, de-identification, de-duplication, and integration of patient data by study cohort, randomization and sampling, re-identification for consent by providers and patients, and communication with patients to elicit patient-reported outcomes through validated instruments. The paper describes these policies and mechanisms and discusses two case studies to prove the feasibility and effectiveness of the network. Keywords: Patient-Centered Outcomes Research; Comparative Effectiveness Research; Electronic Health Records; Data Collection; Data Linkage; Aggregation; Data Sets; Deidentification;Re-identification; Consent.