Patient-Centered Outcomes Research in Practice: The CAPriCORN Infrastructure
Anthony Solomonides, Satyender Goel, Denise Hynes, Jonathan C. Silverstein, Bala Hota, William Trick, Francisco Angulo, Ron Price, Eugene Sadhu, Susan Zelisko, James Fischer, Brian Furner, Andrew Hamilton, Jasmin Phua, Wendy Brown, Samuel F. Hohmann, David Meltzer, Elizabeth Tarlov, Frances M. Weaver, Helen Zhang, Thomas Concannon, Abel Kho
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.
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