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

doi:10.3233/978-1-61499-564-7-584

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

Medicine, General Medicine Division

Research output: Chapter in Book/Report/Conference proceeding › Conference 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 language	English (US)
Title of host publication	MEDINFO 2015
Subtitle of host publication	eHealth-Enabled Health - Proceedings of the 15th World Congress on Health and Biomedical Informatics
Editors	Andrew Georgiou, Indra Neil Sarkar, Paulo Mazzoncini de Azevedo Marques
Publisher	IOS Press
Pages	584-588
Number of pages	5
ISBN (Electronic)	9781614995630
DOIs	https://doi.org/10.3233/978-1-61499-564-7-584
State	Published - 2015
Event	15th World Congress on Health and Biomedical Informatics, MEDINFO 2015 - Sao Paulo, Brazil Duration: Aug 19 2015 → Aug 23 2015

Publication series

Name	Studies in Health Technology and Informatics
Volume	216
ISSN (Print)	0926-9630
ISSN (Electronic)	1879-8365

Other

Other	15th World Congress on Health and Biomedical Informatics, MEDINFO 2015
Country	Brazil
City	Sao Paulo
Period	8/19/15 → 8/23/15

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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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., ... Kho, A. (2015). Patient-Centered Outcomes Research in Practice: The CAPriCORN Infrastructure. In A. Georgiou, I. N. Sarkar, & P. M. de Azevedo Marques (Eds.), MEDINFO 2015: eHealth-Enabled Health - Proceedings of the 15th World Congress on Health and Biomedical Informatics (pp. 584-588). (Studies in Health Technology and Informatics; Vol. 216). IOS Press. https://doi.org/10.3233/978-1-61499-564-7-584

Solomonides, Anthony ; Goel, Satyender ; Hynes, Denise ; Silverstein, Jonathan C. ; Hota, Bala ; Trick, William ; Angulo, Francisco ; Price, Ron ; Sadhu, Eugene ; Zelisko, Susan ; Fischer, James ; Furner, Brian ; Hamilton, Andrew ; Phua, Jasmin ; Brown, Wendy ; Hohmann, Samuel F. ; Meltzer, David ; Tarlov, Elizabeth ; Weaver, Frances M. ; Zhang, Helen ; Concannon, Thomas ; Kho, Abel. / Patient-Centered Outcomes Research in Practice : The CAPriCORN Infrastructure. MEDINFO 2015: eHealth-Enabled Health - Proceedings of the 15th World Congress on Health and Biomedical Informatics. editor / Andrew Georgiou ; Indra Neil Sarkar ; Paulo Mazzoncini de Azevedo Marques. IOS Press, 2015. pp. 584-588 (Studies in Health Technology and Informatics).

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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.",

keywords = "Aggregation, Comparative Effectiveness Research, Consent, Data Collection, Data Linkage, Data Sets, Deidentification, Electronic Health Records, Patient-Centered Outcomes Research, Re-identification",

author = "Anthony Solomonides and Satyender Goel and Denise Hynes and Silverstein, {Jonathan C.} and Bala Hota and William Trick and Francisco Angulo and Ron Price and Eugene Sadhu and Susan Zelisko and James Fischer and Brian Furner and Andrew Hamilton and Jasmin Phua and Wendy Brown and Hohmann, {Samuel F.} and David Meltzer and Elizabeth Tarlov and Weaver, {Frances M.} and Helen Zhang and Thomas Concannon and Abel Kho",

year = "2015",

doi = "10.3233/978-1-61499-564-7-584",

language = "English (US)",

series = "Studies in Health Technology and Informatics",

publisher = "IOS Press",

pages = "584--588",

editor = "Andrew Georgiou and Sarkar, {Indra Neil} and {de Azevedo Marques}, {Paulo Mazzoncini}",

booktitle = "MEDINFO 2015",

note = "15th World Congress on Health and Biomedical Informatics, MEDINFO 2015 ; Conference date: 19-08-2015 Through 23-08-2015",

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Solomonides, A, Goel, S, Hynes, D, 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 2015, Patient-Centered Outcomes Research in Practice: The CAPriCORN Infrastructure. in A Georgiou, IN Sarkar & PM de Azevedo Marques (eds), MEDINFO 2015: eHealth-Enabled Health - Proceedings of the 15th World Congress on Health and Biomedical Informatics. Studies in Health Technology and Informatics, vol. 216, IOS Press, pp. 584-588, 15th World Congress on Health and Biomedical Informatics, MEDINFO 2015, Sao Paulo, Brazil, 8/19/15. https://doi.org/10.3233/978-1-61499-564-7-584

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

MEDINFO 2015: eHealth-Enabled Health - Proceedings of the 15th World Congress on Health and Biomedical Informatics. ed. / Andrew Georgiou; Indra Neil Sarkar; Paulo Mazzoncini de Azevedo Marques. IOS Press, 2015. p. 584-588 (Studies in Health Technology and Informatics; Vol. 216).

Research output: Chapter in Book/Report/Conference proceeding › Conference contribution

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AU - Hota, Bala

AU - Trick, William

AU - Angulo, Francisco

AU - Price, Ron

AU - Sadhu, Eugene

AU - Zelisko, Susan

AU - Fischer, James

AU - Furner, Brian

AU - Hamilton, Andrew

AU - Phua, Jasmin

AU - Brown, Wendy

AU - Hohmann, Samuel F.

AU - Meltzer, David

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AU - Weaver, Frances M.

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AU - Concannon, Thomas

AU - Kho, Abel

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N2 - 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.

AB - 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.

KW - Aggregation

KW - Comparative Effectiveness Research

KW - Consent

KW - Data Collection

KW - Data Linkage

KW - Data Sets

KW - Deidentification

KW - Electronic Health Records

KW - Patient-Centered Outcomes Research

KW - Re-identification

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Solomonides A, Goel S, Hynes D, Silverstein JC, Hota B, Trick W et al. Patient-Centered Outcomes Research in Practice: The CAPriCORN Infrastructure. In Georgiou A, Sarkar IN, de Azevedo Marques PM, editors, MEDINFO 2015: eHealth-Enabled Health - Proceedings of the 15th World Congress on Health and Biomedical Informatics. IOS Press. 2015. p. 584-588. (Studies in Health Technology and Informatics). https://doi.org/10.3233/978-1-61499-564-7-584