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 |
Volume | 216 |
Pagination | 584-8 |
Date Published | 2015 |
ISSN | 0926-9630 |
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 |
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. |
URL | http://ebooks.iospress.nl/publication/40276 |
DOI | 10.3233/978-1-61499-564-7-584 |
Alternate Journal | Stud Health Technol Inform |
PubMed ID | 26262118 |