Patient-Centered Outcomes Research in Practice: The CAPriCORN Infrastructure Journal Article

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Authors: Solomonides, A.; Goel, S.; Hynes, D.; Silverstein, J. C.; Hota, B.; Trick, W.; Angulo, F.; Price, R; Sadhu, E.; Zelisko, S; Fischer, J.; Furner, B.; Hamilton, A.; Phua, J.; Brown, W.; Hohmann, S. F.; Meltzer, D.; Tarlov, E; Weaver, F M; Zhang, H; Concannon, T.; Kho, A.
Article Title: Patient-Centered Outcomes Research in Practice: The CAPriCORN Infrastructure
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.
Journal Title: Studies in health technology and informatics
Volume: 216
ISSN: 0926-9630; 0926-9630
Publisher: Unknown  
Journal Place: Netherlands
Date Published: 2015
Start Page: 584
End Page: 588
Language: eng
Notes: JID: 9214582; ppublish