Patient-Centered Outcomes Research in Practice: The CAPriCORN Infrastructure.
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.
Center for Biomedical Research Informatics, NorthShore University HealthSystem.
Anthony
A
Solomonides
Feinberg School of Medicine, Northwestern University.
Satyender
S
Goel
University of Illinois, Chicago.
Denise
D
Hynes
Center for Biomedical Research Informatics, NorthShore University HealthSystem.
Jonathan C
JC
Silverstein
Rush University Medical Center-Department of Medicine.
Bala
B
Hota
Cook County Health and Hospital Systems.
William
W
Trick
Cook County Health and Hospital Systems.
Francisco
F
Angulo
Loyola University Health System.
Ron
R
Price
University of Illinois, Chicago.
Eugene
E
Sadhu
Loyola University Health System.
Susan
S
Zelisko
University of Illinois, Chicago.
James
J
Fischer
University of Chicago-Center for Research Informatics.
Brian
B
Furner
Alliance of Chicago Community Health Services.
Andrew
A
Hamilton
Medical Research Analytics and Informatics Alliance.
Jasmin
J
Phua
VA Jesse Brown Hospital.
Wendy
W
Brown
Universities Healthsystem Consortium.
Samuel F
SF
Hohmann
University of Chicago-Medicine.
David
D
Meltzer
University of Illinois, Chicago.
Elizabeth
E
Tarlov
Loyola University Health System.
Frances M
FM
Weaver
Cook County Health and Hospital Systems.
Helen
H
Zhang
RAND Corporation.
Thomas
T
Concannon
Feinberg School of Medicine, Northwestern University.
Abel
A
Kho
D000046:Academic Medical Centers; D002641:Chicago; D016494:Computer Security; D003219:Confidentiality; D057286:Electronic Health Records / Q000458:organization & administration*; D006302:Health Services Research / Q000458:organization & administration*; D016247:Information Storage and Retrieval / Q000379:methods; D007373:Interinstitutional Relations; D008498:Medical Record Linkage / Q000379:methods; D017063:Outcome Assessment, Health Care / Q000458:organization & administration*; D018802:Patient-Centered Care / Q000458:organization & administration*