the challenges of bridging his/emrs and research information systems
DESCRIPTION
The Challenges of Bridging HIS/EMRs and Research Information Systems. James J. Cimino Chief, laboratory for Informatics Development NIH Clinical Center Bethesda, Maryland. Bridging Patient Care and Research at NIH. The NIH Clinical Center and research - PowerPoint PPT PresentationTRANSCRIPT
![Page 1: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/1.jpg)
The Challenges of Bridging HIS/EMRs and Research Information Systems
James J. CiminoChief, laboratory for Informatics Development
NIH Clinical CenterBethesda, Maryland
![Page 2: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/2.jpg)
Bridging Patient Care and Research at NIH
• The NIH Clinical Center and research
• The Biomedical Translational Research Information System (BTRIS)
• Technical Issues
• Policy Issues
![Page 3: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/3.jpg)
The NIH Clinical Center
![Page 4: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/4.jpg)
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
![Page 5: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/5.jpg)
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
![Page 6: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/6.jpg)
The National Institutes of Health
![Page 7: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/7.jpg)
BTRIS
![Page 8: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/8.jpg)
BTRIS
![Page 9: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/9.jpg)
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
![Page 10: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/10.jpg)
Technical Issues
• Data sources
• Data model integration
• Queries that are:– Cross-patient– Cross-protocol– Cross-source– Concept oriented
![Page 11: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/11.jpg)
Data Sources
• Order entry system
• Ancillary systems
• Archived clinical data
• Institute and Center (IC) systems
• Individual researchers’ systems
• Notebooks
![Page 12: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/12.jpg)
Data Model Integration
• Events and details
• Entity-relation vs entity-attribute-value
• Denormalization
![Page 13: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/13.jpg)
Research Entities Dictionary (RED)
• Apelon’s Terminology Development Editor
• NCI/caBIG Thesaurus
![Page 14: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/14.jpg)
![Page 15: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/15.jpg)
• Apelon’s Terminology Development Editor
• NCI/caBIG Thesaurus
Research Entities Dictionary
• Content
• Organization
![Page 16: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/16.jpg)
![Page 17: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/17.jpg)
![Page 18: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/18.jpg)
![Page 19: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/19.jpg)
![Page 20: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/20.jpg)
Access Policies
• Privacy Act, not HIPAA
• Policy Working Group
• Intellectual property vs. public domain
• Identifiers
• Unlinked, coded data
![Page 21: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/21.jpg)
BTRIS Data Storage Policy
InactiveProtocols
ActiveProtocols
![Page 22: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/22.jpg)
BTRIS Data Use Policy
InactiveProtocols
ActiveProtocols
PIs/AIs
![Page 23: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/23.jpg)
BTRIS Data Use Policy
InactiveProtocols
ActiveProtocols
PIs/AIsBlockedBy PI
![Page 24: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/24.jpg)
Identifiers Coded Data
ActiveProtocols
InactiveProtocols
BTRIS Data Use Policy
BlockedBy PI
PIs/AIs
![Page 25: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/25.jpg)
Identifiers CodedResults
CodedEvents
ActiveProtocols
InactiveProtocols
BTRIS Data Use Policy
![Page 26: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/26.jpg)
Identifiers CodedResults
CodedEvents
ActiveProtocols
InactiveProtocols
BTRIS Data Use Policy
PIOnly
PIOnly
RestrictedBy PI
SharableThrough PI
![Page 27: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/27.jpg)
Identifiers
ActiveProtocols
InactiveProtocols
UnencumberedBy PI
BTRIS Data Use PolicyCodedResults
CodedEvents
PIOnly
PIOnly
RestrictedBy PI
SharableThrough PI
NoAccess
![Page 28: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/28.jpg)
Identifiers
ActiveProtocols
InactiveProtocols
Sharablethrough PI
UnencumberedBy PI
BTRIS Data Use PolicyCodedResults
CodedEvents
PIOnly
PIOnly
RestrictedBy PI
SharableThrough PI
NoAccess
![Page 29: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/29.jpg)
Identifiers
ActiveProtocols
InactiveProtocols
Sharablethrough PI
UnencumberedBy PI
BTRIS Data Use PolicyCodedResults
CodedEvents
PIOnly
PIOnly
RestrictedBy PI
SharableThrough PI
NoAccess
![Page 30: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/30.jpg)
Identifiers
ActiveProtocols
InactiveProtocols
Sharablethrough PI
UnencumberedBy PI
BTRIS Data Use PolicyCodedResults
CodedEvents
PIOnly
PIOnly
RestrictedBy PI
SharableThrough PI
NoAccess
PIs/AIs
![Page 31: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/31.jpg)
Identifiers
ActiveProtocols
InactiveProtocols
Sharablethrough PI
UnencumberedBy PI
BTRIS Data Use PolicyCodedResults
CodedEvents
PIOnly
PIOnly
RestrictedBy PI
SharableThrough PI
NoAccess
OtherResearchers
![Page 32: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/32.jpg)
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
![Page 33: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/33.jpg)
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
![Page 34: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/34.jpg)
BTRIS in the Research Process
Recruitment
PatientAccrual
Publications
IRBApproval
Write Protocol
HypothesisGeneration
Reporting
Data GatheringAnd Analysis
B RISB RIS
![Page 35: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/35.jpg)
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
![Page 36: The Challenges of Bridging HIS/EMRs and Research Information Systems](https://reader036.vdocuments.us/reader036/viewer/2022062519/56814e2d550346895dbb9218/html5/thumbnails/36.jpg)
Remaining Challenges
• Can we scale up to handle all sources:– Data– Terminologies
• Incentive for researchers to contribute data
• Access to “involuntarily contributed” data