The Challenges of Bridging HIS/EMRs and Research Information Systems James J. Cimino Chief,...
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The Challenges of Bridging HIS/EMRs and Research Information Systems
James J. CiminoChief, laboratory for Informatics Development
NIH Clinical CenterBethesda, Maryland
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Bridging Patient Care and Research at NIH
• The NIH Clinical Center and research
• The Biomedical Translational Research Information System (BTRIS)
• Technical Issues
• Policy Issues
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The NIH Clinical Center
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The Clinical Research Information System (CRIS)
• Patient data stored in EHR (Eclipsys)
• Need to extract individual data for analysis
• Need cross-patient queries for additional analysis
• Data may require transformation:– De-identification and Re-identification– Indexing– Aggregation by time– Abstraction by classification
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What is BTRIS?• Biomedical data
– Research data collected using clinical information systems
– Clinical data collected using clinical information systems
– Research data from research information systems– Non-human data
• Reuse of data to support translational research
• Hence: Biomedical Translational Research Information System
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The National Institutes of Health
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BTRIS
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BTRIS
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O n t o l o g y
Data Acquisition ProcessesCoding Indexing De-Identifying Permission Setting
BTRISData Repository
Data Retrieval FunctionsAuthorization Subject-Oriented Cross-Subject Re-Identification NLP
Data Analysis ToolsSubject Recruitment Hypothesis Generation Hypothesis Testing
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Technical Issues
• Data sources
• Data model integration
• Queries that are:– Cross-patient– Cross-protocol– Cross-source– Concept oriented
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Data Sources
• Order entry system
• Ancillary systems
• Archived clinical data
• Institute and Center (IC) systems
• Individual researchers’ systems
• Notebooks
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Data Model Integration
• Events and details
• Entity-relation vs entity-attribute-value
• Denormalization
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Research Entities Dictionary (RED)
• Apelon’s Terminology Development Editor
• NCI/caBIG Thesaurus
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• Apelon’s Terminology Development Editor
• NCI/caBIG Thesaurus
Research Entities Dictionary
• Content
• Organization
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Access Policies
• Privacy Act, not HIPAA
• Policy Working Group
• Intellectual property vs. public domain
• Identifiers
• Unlinked, coded data
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BTRIS Data Storage Policy
InactiveProtocols
ActiveProtocols
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BTRIS Data Use Policy
InactiveProtocols
ActiveProtocols
PIs/AIs
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BTRIS Data Use Policy
InactiveProtocols
ActiveProtocols
PIs/AIsBlockedBy PI
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Identifiers Coded Data
ActiveProtocols
InactiveProtocols
BTRIS Data Use Policy
BlockedBy PI
PIs/AIs
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Identifiers CodedResults
CodedEvents
ActiveProtocols
InactiveProtocols
BTRIS Data Use Policy
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Identifiers CodedResults
CodedEvents
ActiveProtocols
InactiveProtocols
BTRIS Data Use Policy
PIOnly
PIOnly
RestrictedBy PI
SharableThrough PI
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Identifiers
ActiveProtocols
InactiveProtocols
UnencumberedBy PI
BTRIS Data Use PolicyCodedResults
CodedEvents
PIOnly
PIOnly
RestrictedBy PI
SharableThrough PI
NoAccess
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Identifiers
ActiveProtocols
InactiveProtocols
Sharablethrough PI
UnencumberedBy PI
BTRIS Data Use PolicyCodedResults
CodedEvents
PIOnly
PIOnly
RestrictedBy PI
SharableThrough PI
NoAccess
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Identifiers
ActiveProtocols
InactiveProtocols
Sharablethrough PI
UnencumberedBy PI
BTRIS Data Use PolicyCodedResults
CodedEvents
PIOnly
PIOnly
RestrictedBy PI
SharableThrough PI
NoAccess
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Identifiers
ActiveProtocols
InactiveProtocols
Sharablethrough PI
UnencumberedBy PI
BTRIS Data Use PolicyCodedResults
CodedEvents
PIOnly
PIOnly
RestrictedBy PI
SharableThrough PI
NoAccess
PIs/AIs
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Identifiers
ActiveProtocols
InactiveProtocols
Sharablethrough PI
UnencumberedBy PI
BTRIS Data Use PolicyCodedResults
CodedEvents
PIOnly
PIOnly
RestrictedBy PI
SharableThrough PI
NoAccess
OtherResearchers
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BTRIS Policy WG: Data Inclusion
1. All Data from CC (including historical archives) will be included
2. Data from institutes, centers, laboratories and investigators will be included on a voluntary basis
3. Other intramural data to be included as per NIH policy
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BTRIS Policy WG: Data Access1. Investigators will have access to data in
their active protocols as per current policies and practices
2. All NIH personnel will have access to de-identified data for research purposes
3. Investigators will retain on-going rights to some data
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BTRIS in the Research Process
Recruitment
PatientAccrual
Publications
IRBApproval
Write Protocol
HypothesisGeneration
Reporting
Data GatheringAnd Analysis
B RISB RIS
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BTRIS Will:
• Be the preferred system to analyze NIH clinical and non-clinical data
• Aggregate and standardize disparate and isolated data sets
• Automate and streamline processes that are traditionally manual and cumbersome
• Prioritize data sources and functionality based on needs of user community
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Remaining Challenges
• Can we scale up to handle all sources:– Data– Terminologies
• Incentive for researchers to contribute data
• Access to “involuntarily contributed” data