TitlePatient-Centered Outcomes Research in Practice: The CAPriCORN Infrastructure.
Publication TypeJournal Article
Year of Publication2015
AuthorsSolomonides, A, Goel, S, Hynes, DM, Silverstein, JC, Hota, B, Trick, W, Angulo, F, Price, R, Sadhu, E, Zelisko, S, Fischer, J, Furner, B, Hamilton, A, Phua, J, Brown, W, Hohmann, SF, Meltzer, D, Tarlov, E, Weaver, FM, Zhang, H, Concannon, T, Kho, A
JournalStud Health Technol Inform
Date Published2015
KeywordsAcademic Medical Centers, Chicago, Computer Security, Confidentiality, Electronic Health Records, Health Services Research, Information Storage and Retrieval, Interinstitutional Relations, Medical Record Linkage, Outcome Assessment (Health Care), Patient-Centered Care

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.

Alternate JournalStud Health Technol Inform
PubMed ID26262118