Patient-Centered Outcomes Research in Practice: The CAPriCORN Infrastructure

Stud Health Technol Inform. 2015:216:584-8.

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.

MeSH terms

  • Academic Medical Centers
  • Chicago
  • Computer Security
  • Confidentiality*
  • Electronic Health Records / organization & administration*
  • Health Services Research / organization & administration*
  • Information Storage and Retrieval / methods
  • Interinstitutional Relations
  • Medical Record Linkage / methods
  • Outcome Assessment, Health Care / organization & administration*
  • Patient-Centered Care / organization & administration*