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Thomas R. Campion, Jr., Ph.D.Associate Professor of Research in Healthcare Policy & ResearchDirector, Research Informatics
Supporting Researchers with Electronic Patient Data
12.5.19
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• Problem• Approach
– Research Computing at Weill Cornell Medicine– Architecture for Research Computing in Health (ARCH)
• Discussion
Overview
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• Obtaining electronic health record (EHR) data for clinical and translational research is difficult– Repurpose transactions for research– Use one or more tools– Understand strengths and limitations– Obtain approval
• Optimal approaches are unknown• Research Informatics can help investigators
– Obtain EHR data– Collect novel measures– Integrate data
Problem
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Approach: Research Computing at WCM
Information Technology Infrastructure
Scientific Computing
Research Informatics
Research Administrative
Computing
Conduct Administration
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Architecture for Research Computing in Health (ARCH)
Electronic Data
Capture (EDC)
EDC integrated with EHR
Research Data
Repositories
College-wide
Cohort Discovery
Multi-institutional
Data Sharing
EHR Interventions
EHR Reporting
Consent
WCM-NYP-CUMC Data Sharing
Biobank and Ancillary Omics
Data Core
Data Integration Clinical Translation Compliance & PlanningScientific Computing
Retrospective Prospective
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Retrospective Prospective
Data Integration
Electronic Data
Capture (EDC)
EDC integrated with EHR
College-wide
Cohort Discovery
Multi-institutional
Data Sharing
Architecture for Research Computing in Health (ARCH)
Research Data
Repositories
EHR Reporting
7
Retrospective Prospective
Data Integration
Electronic Data
Capture (EDC)
EDC integrated with EHR
College-wide
Cohort Discovery
Multi-institutional
Data Sharing
Architecture for Research Computing in Health (ARCH)
Research Data
Repositories
EHR Reporting
8
Retrospective Prospective
Data Integration
Electronic Data
Capture (EDC)
EDC integrated with EHR
College-wide
Cohort Discovery
Multi-institutional
Data Sharing
Architecture for Research Computing in Health (ARCH)
Research Data
Repositories
EHR Reporting
Data Core
Scientific Computing
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Data Core
Retrospective Prospective
Data Integration
Model
Grumbach K, Lucey CR, Johnston SC. JAMA. 2014 Mar 19;311(11):1109-10
Retrospective
Electronic Data
Capture (EDC)
EDC integrated with EHR
College-wide
Cohort Discovery
Multi-institutional
Data Sharing
Architecture for Research Computing in Health (ARCH)
Research Data
Repositories
EHR Reporting
Scientific Computing
10
Data Core
Retrospective Prospective
Data Integration
Model
Grumbach K, Lucey CR, Johnston SC. JAMA. 2014 Mar 19;311(11):1109-10
Retrospective
Electronic Data
Capture (EDC)
EDC integrated with EHR
College-wide
Cohort Discovery
Multi-institutional
Data Sharing
EHR Interventions
Clinical Translation
Architecture for Research Computing in Health (ARCH)
Research Data
Repositories
EHR Reporting
Scientific Computing
11
Data Core
Retrospective Prospective
Data Integration
Model
Grumbach K, Lucey CR, Johnston SC. JAMA. 2014 Mar 19;311(11):1109-10
Retrospective
Electronic Data
Capture (EDC)
EDC integrated with EHR
College-wide
Cohort Discovery
Multi-institutional
Data Sharing
EHR Interventions
Clinical Translation
Architecture for Research Computing in Health (ARCH)
Research Data
Repositories
EHR Reporting
Scientific Computing
12
Retrospective ProspectiveRetrospective
Research Data
Repositories
Electronic Data
Capture (EDC)
EHR Reporting
College-wide
Cohort Discovery
Multi-institutional
Data Sharing
Big Data Analytics
EHR Interventions
Architecture for Research Computing in Health (ARCH)
SUPERNLP
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Retrospective ProspectiveRetrospective
Research Data
Repositories
Electronic Data
Capture (EDC)
EHR Reporting
College-wide
Cohort Discovery
Multi-institutional
Data Sharing
Big Data Analytics
EHR Interventions
Architecture for Research Computing in Health (ARCH)
SUPER
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Retrospective ProspectiveRetrospective
Research Data
Repositories
Electronic Data
Capture (EDC)
EHR Reporting
College-wide
Cohort Discovery
Multi-institutional
Data Sharing
Big Data Analytics
EHR Interventions
Architecture for Research Computing in Health (ARCH)
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Step 1: obtain raw EHR data describing diagnoses assigned in patients encounters
ARCH: EHR Reporting
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Step 2: match raw EHR data describing diagnoses to ICD-9 codes
ARCH: EHR Reporting
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Step 3: transform raw EHR data describing ICD-9 codes into dichotomous scientific variable
ARCH: EHR Reporting
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Step 4: repeat process to define additional diagnosis dichotomous variables
ARCH: EHR Reporting
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Step 4: repeat process to transform raw EHR data for medications and other domains (raw data for medications and other domains not pictured)
ARCH: EHR Reporting
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Retrospective ProspectiveRetrospective
Research Data
Repositories
Electronic Data
Capture (EDC)
EHR Reporting
College-wide
Cohort Discovery
Multi-institutional
Data Sharing
Big Data Analytics
EHR Interventions
Architecture for Research Computing in Health (ARCH)
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ARCH: i2b2
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ARCH: i2b2
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ARCH: i2b2
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ARCH: i2b2
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ARCH: i2b2
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ARCH: i2b2
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ARCH: i2b2
28
ARCH: i2b2
29
ARCH: i2b2
30
ARCH: i2b2
31
ARCH: i2b2
32
Retrospective ProspectiveRetrospective
Research Data
Repositories
Electronic Data
Capture (EDC)
EHR Reporting
College-wide
Cohort Discovery
Multi-institutional
Data Sharing
Big Data Analytics
EHR Interventions
Architecture for Research Computing in Health (ARCH)
SUPER
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ARCH: SUPER REDCap
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3434
ARCH: SUPER REDCap
3535
ARCH: SUPER REDCap
3636
ARCH: SUPER REDCap
3737
ARCH: SUPER REDCap
3838
ARCH: SUPER REDCap
3939
ARCH: SUPER REDCap
4040
ARCH: SUPER REDCap
4141
ARCH: SUPER REDCap
4242
ARCH: SUPER REDCap
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ARCH: SUPER REDCap on FHIR
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Retrospective Prospective
Electronic Data
Capture (EDC)
EDC integrated with EHR
College-wide
Cohort Discovery
Multi-institutional
Data Sharing
EHR Reporting
Research Data
Repositories
ARCH: Architecture for Research Computing in Health
45
Retrospective Prospective
Electronic Data
Capture (EDC)
EDC integrated with EHR
College-wide
Cohort Discovery
Multi-institutional
Data Sharing
EHR Reporting
Research Data
Repositories
ARCH: Architecture for Research Computing in Health
46
Retrospective Prospective
Electronic Data
Capture (EDC)
EDC integrated with EHR
College-wide
Cohort Discovery
EHR Reporting
Research Data
Repositories
ARCH: Architecture for Research Computing in Health
Multi-institutional
Data Sharing
47
Retrospective Prospective
Electronic Data
Capture (EDC)
EDC integrated with EHR
College-wide
Cohort Discovery
EHR Reporting
Research Data
Repositories
ARCH: Architecture for Research Computing in Health
Multi-institutional
Data Sharing
48
Retrospective Prospective
Electronic Data
Capture (EDC)
EDC integrated with EHR
College-wide
Cohort Discovery
EHR Reporting
Biobank
Research Data
Repositories
ARCH: Architecture for Research Computing in Health
Multi-institutional
Data Sharing
49
Retrospective Prospective
Electronic Data
Capture (EDC)
EDC integrated with EHR
College-wide
Cohort Discovery
EHR Reporting
Biobank
Research Data
Repositories
ARCH: Architecture for Research Computing in Health
Multi-institutional
Data Sharing
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ARCH: Research Data Repository
Data
RDR
Other
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SUPERData
Tools
RDR
Other
ARCH: Research Data Repository
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SUPERData
Tools
RDR
Other
ARCH: Research Data Repository• Discovery
– Hypothesis generation– Patient counts
• Collection– Capture of novel
measures– Annotation of existing
data
• Analysis– Scientific variable
definition– Hypothesis testing
Workflows
53
SUPERData
Tools
RDR
Other
ARCH: Research Data Repository• Discovery
– Hypothesis generation– Patient counts
• Collection– Capture of novel
measures– Annotation of existing
data
• Analysis– Scientific variable
definition– Hypothesis testing
Workflows
Study 1Study 2Study n: future
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• All of Us Research Program (Kaushal)• Anesthesiology (Turnbull)• Center for Advanced Digestive Care (Shah)• Clinical and Translational Neuroscience Unit (Kamel)• Dalio Institute (Min)• Health Informatics (Pathak/Zhang)• Leukemia Program (Roboz)• Myeloproliferative Neoplasms (Scandura)• Neurological Surgery (Hoffman)• Ophthalmology (D’Amico)• Pediatric Epilepsy (Grinspan)• Pediatric Pulmonology (Ono)• Pulmonary and Critical Care (Schenck)• Urology (Hu)• Trauma and Surgical Critical Care (Winchell)
ARCH: Research Data Repositories
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ARCH RDRs: Data Catalog
http://datacatalog.weill.cornell.edu
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• Research Informatics can help investigators– Obtain EHR data– Collect novel research data– Integrate data
• ARCH matches investigators with right tools and services with respect to– Study design– Data sources– Cost
Discussion
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AcknowledgmentsFunding
– Clinical and Translational Science Center (UL1 TR000457)
– Joint Clinical Trials Office
ARCH Leadership– Curtis Cole, MD– John Leonard, MD– Mark Weiner, MD
ITS Research Informatics– Sajjad Abedian– Prakash Adekkanattu– Marcos Davila– Xiaobo Fuld– David Kraemer– Steven Flores– Joseph Kabariti– Ryan McGregor– Sean Pompea– Julian Schwartz– Evan Sholle– Scott Turner– Jacob Weiser
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• Access and inquiries– ARCH inquiries: [email protected]– i2b2 access: [email protected]
• Web resources– ARCH: http://arch.weill.cornell.edu– TRAC: https://webapps.nyp.org/trac– Data Catalog: http://datacatalog.weill.cornell.edu
• Tom Campion– [email protected]– 646-962-2345– http://vivo.med.cornell.edu/display/cwid-thc2015
Questions