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 ZhangThomas Concannon, Abel Kho

*Corresponding author for this work

Research output: Chapter in Book/Report/Conference proceedingConference contribution

3 Scopus citations

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.

Original languageEnglish (US)
Title of host publicationMEDINFO 2015
Subtitle of host publicationeHealth-Enabled Health - Proceedings of the 15th World Congress on Health and Biomedical Informatics
EditorsAndrew Georgiou, Indra Neil Sarkar, Paulo Mazzoncini de Azevedo Marques
PublisherIOS Press
Pages584-588
Number of pages5
ISBN (Electronic)9781614995630
DOIs
StatePublished - 2015
Event15th World Congress on Health and Biomedical Informatics, MEDINFO 2015 - Sao Paulo, Brazil
Duration: Aug 19 2015Aug 23 2015

Publication series

NameStudies in Health Technology and Informatics
Volume216
ISSN (Print)0926-9630
ISSN (Electronic)1879-8365

Other

Other15th World Congress on Health and Biomedical Informatics, MEDINFO 2015
CountryBrazil
CitySao Paulo
Period8/19/158/23/15

Keywords

  • Aggregation
  • Comparative Effectiveness Research
  • Consent
  • Data Collection
  • Data Linkage
  • Data Sets
  • Deidentification
  • Electronic Health Records
  • Patient-Centered Outcomes Research
  • Re-identification

ASJC Scopus subject areas

  • Biomedical Engineering
  • Health Informatics
  • Health Information Management

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