|Title||Patient-Centered Outcomes Research in Practice: The CAPriCORN Infrastructure.|
|Publication Type||Journal Article|
|Year of Publication||2015|
|Authors||Solomonides, 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|
|Journal||Stud Health Technol Inform|
|Keywords||Academic 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 Journal||Stud Health Technol Inform|