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The Challenges of Bridging HIS/EMRs and Research Information Systems

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

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The Challenges of Bridging HIS/EMRs and Research Information Systems

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  1. The Challenges of Bridging HIS/EMRs and Research Information Systems James J. Cimino Chief, laboratory for Informatics Development NIH Clinical Center Bethesda, Maryland

  2. Bridging Patient Care and Research at NIH • The NIH Clinical Center and research • The Biomedical Translational Research Information System (BTRIS) • Technical Issues • Policy Issues

  3. The NIH Clinical Center

  4. 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

  5. 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

  6. The National Institutes of Health

  7. BTRIS

  8. BTRIS

  9. Data Analysis Tools Subject RecruitmentHypothesis GenerationHypothesis Testing Data Acquisition Processes CodingIndexingDe-IdentifyingPermission Setting O n t o l o g y Data Retrieval Functions AuthorizationSubject-OrientedCross-SubjectRe-IdentificationNLP Data Repository BTRIS

  10. Technical Issues • Data sources • Data model integration • Queries that are: • Cross-patient • Cross-protocol • Cross-source • Concept oriented

  11. Data Sources • Order entry system • Ancillary systems • Archived clinical data • Institute and Center (IC) systems • Individual researchers’ systems • Notebooks

  12. Data Model Integration • Events and details • Entity-relation vs entity-attribute-value • Denormalization

  13. Research Entities Dictionary (RED) • Apelon’s Terminology Development Editor • NCI/caBIG Thesaurus

  14. Research Entities Dictionary • Apelon’s Terminology Development Editor • NCI/caBIG Thesaurus • Content • Organization

  15. Access Policies • Privacy Act, not HIPAA • Policy Working Group • Intellectual property vs. public domain • Identifiers • Unlinked, coded data

  16. BTRIS Data Storage Policy Active Protocols Inactive Protocols

  17. PIs/AIs BTRIS Data Use Policy Active Protocols Inactive Protocols

  18. BTRIS Data Use Policy PIs/AIs Blocked By PI Active Protocols Inactive Protocols

  19. BTRIS Data Use Policy Coded Data Identifiers PIs/AIs Blocked By PI Active Protocols Inactive Protocols

  20. BTRIS Data Use Policy Coded Events Identifiers Coded Results Active Protocols Inactive Protocols

  21. BTRIS Data Use Policy Coded Events Identifiers Coded Results Restricted By PI PI Only Active Protocols Sharable Through PI PI Only Inactive Protocols

  22. BTRIS Data Use Policy Coded Events Identifiers Coded Results Restricted By PI PI Only Active Protocols Sharable Through PI PI Only Unencumbered By PI No Access Inactive Protocols

  23. BTRIS Data Use Policy Coded Events Identifiers Coded Results Restricted By PI PI Only Active Protocols Sharable Through PI PI Only Unencumbered By PI No Access Inactive Protocols Sharable through PI

  24. BTRIS Data Use Policy Coded Events Identifiers Coded Results Restricted By PI PI Only Active Protocols Sharable Through PI PI Only Unencumbered By PI No Access Inactive Protocols Sharable through PI

  25. BTRIS Data Use Policy Coded Events Identifiers Coded Results Restricted By PI PI Only PIs/AIs Active Protocols Sharable Through PI PI Only Unencumbered By PI No Access Inactive Protocols Sharable through PI

  26. BTRIS Data Use Policy Coded Events Identifiers Coded Results Restricted By PI PI Only Active Protocols Sharable Through PI PI Only Other Researchers Unencumbered By PI No Access Inactive Protocols Sharable through PI

  27. BTRIS Policy WG: Data Inclusion • All Data from CC (including historical archives) will be included • Data from institutes, centers, laboratories and investigators will be included on a voluntary basis • Other intramural data to be included as per NIH policy

  28. BTRIS Policy WG: Data Access • Investigators will have access to data in their active protocols as per current policies and practices • All NIH personnel will have access to de-identified data for research purposes • Investigators will retain on-going rights to some data

  29. BTRIS in the Research Process Hypothesis Generation IRB Approval Publications Recruitment B RIS Reporting Patient Accrual Data Gathering And Analysis Write Protocol

  30. 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

  31. Remaining Challenges • Can we scale up to handle all sources: • Data • Terminologies • Incentive for researchers to contribute data • Access to “involuntarily contributed” data

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