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Explore the importance of public health data standards and their impact on healthcare delivery, research, and emergency response. Learn about key acronyms such as HIPAA, NCVHS, and CHI, and standards like LOINC, RxNorm, and SNOMED CT. Discover how data elements, entity descriptions, and messaging standards play a crucial role in standardizing health information. Gain insights into achieving U.S. health data standards and recommendations for accelerating adoption and use of standards. Find out about the Unified Medical Language System (UMLS) and its role in maintaining a comprehensive vocabulary database. Stay informed about the latest updates in the UMLS Metathesaurus and its various source vocabularies.
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Public Health Data Standards: Partner Perspectives Federal, State, and Local Agencies National Library of Medicine National Institutes of Health U.S. Department of Health and Human Services Betsy L. Humphreys http://www.nlm.nih.gov ~ http://phpartners.org
Key Acronyms • HIPAA - Administrative Simplification section of Health Insurance Portability and Accountability Act of 1996 • NCVHS - National Committee on Vital and Health Statistics, a long-standing (50+ years) advisory committee to HHS, which was strengthened and expanded by HIPAA • CHI - Consolidated Health Informatics project, a cross-agency eGov initiative led by HHS, DOD, and VA • LOINC - Logical Observations: Identifiers,Names,Codes • RxNorm - Clinical drug nomenclature (ingredient + strength + dose form) • SNOMED CT - Systematized Nomenclature of Medicine Clinical Terms - formed by SNOMED and Read merger
Data content standards include: • Data elements, e.g., gender, presenting complaint • Descriptions of entities, e.g., birth certificate • Messages,e.g., lab test order • Allowable values for data elements, which can be entire *vocabularies • *Mappings between different value sets, e.g., between SNOMED and ICD-9-CM • Information modelsthat define the context in which standards are used • Survey questions and any coded responses • Guideline, protocol, and algorithm formats
Basic Assumptions • Electronic health data standards - including standard vocabulary - are part of the information infrastructure needed for efficient: • health care, clinical research, health services research, public health, and emergency detection and response • All of these should use common data standards to the extent possible • Public health requirements must be fed into the standards development process • Public health must participate in testing and promoting the use of standards
Recommended steps to achieving U.S. health data standards (1990-2003) • aEstablish a mechanism for designating U.S. Standards - HIPAA, NCVHS, CHI • aPick best available as starting point - NCVHS, CHI • Broaden participation in standards development • *Support development, maintenance, and low/no cost distribution • Promote use and improvement • Coordinate development of selected standards to achieve non-overlapping, interlocking set
Support development, maintenance, and low/no cost distribution – NLM-led actions • 1999 – LOINC (lab tests/instrument observations) - contract support • 2002 – RxNorm (clinical drugs) - direct development • 2003 – SNOMED CT contract & license for U.S-wide use (as distributed by NLM in UMLS)
NHII Agenda Meeting (June 30–July 2, 2003)Standards Recommendations • Accelerate adoption and use of standards • Early adoption/feedback by Federal agencies, trading partners, grantees and contractors • Labeling data at the source • Demonstration projects, cost-benefit research • Financial incentives • Expedite enhancement, alignment, coordination, and dissemination of standards • Continue to designate standards
Accelerate adoption and use • Promote use of standards in NIH-funded clinical research networks • NIH Roadmap priority: Re-engineering the clinical research enterprise • Encourage manufacturers to include LOINC in device output/test kit packaging • Need help to identify manufacturers important to public health community • Collaborate with other HHS agencies to support demonstration/testing
NHII Agenda Meeting (June 30–July 2, 2003)Standards Recommendations • Accelerate adoption and use of standards • * Expedite enhancement, alignment, coordination, and dissemination of standards, e.g., • Set up robust, nimble process for responding to feedback from use of standards • Align HL7 messages with vocabularies • Support/co-ordinate inter-vocabulary mapping • Standardize procedures for updating and distributing standards content (within UMLS Metathesaurus) • Continue to designate standards
Unified Medical Language System® (UMLS®) Metathesaurus® - a vocabulary database • preserves the meanings, hierarchical connections, and other relationships between terms present in its source vocabularies • adds certain basic definitional information about each of its concepts • establishesnew relationships between concepts and terms from different source vocabularies • distributes many vocabularies in a common, explicit format
UMLS Source “Vocabularies” • Widely varying purposes, structures, properties, but all are in essence “sets of valid values” for data elements: • HIPAA code sets, e.g., ICD-9-CM, CPT • NCVHS and CHI recommended clinical standards, e.g., SNOMED CT, LOINC, RxNorm • Thesauri for biomedical literature, e.g., MeSH • Other lists of controlled terms, e.g., HL7 value sets
2004AA UMLS Metathesaurus (Apr.2004) • ~1,022,000 concepts • ~2,383,000 unique “strings” (Eye, Eyes, eye = 3) • ~3,030,000 source vocabulary terms • 111 source vocabularies • 15 different languages • Includes active SNOMED CT (English) • Spanish will appear in 2004AB; inactive in 2004AC
Expedite enhancement, alignment, coordination, and dissemination of standards • UMLS® Metathesaurus® – common distribution format/mechanism for CHI standards - HIPAA code sets • 2004AA - UMLS distribution format changes to support • Complete “Source Transparency” • Easier extraction of subsets for particular purposes • Complete “change sets” from previous versions • Sophisticated, purpose-specific inter-vocabulary mapping
Expedite enhancement, alignment, coordination, and dissemination of standards • Define boundaries and relationships • SNOMED CT / LOINC / RxNorm • HL7-CHI vocabularies • Coded values • Message segments • Support/co-ordinate inter-vocabulary mapping • CHI standards – HIPAA code sets • Will need to align update schedules
Expedite enhancement, alignment, coordination, and dissemination of standards • Expand documentation, user guides, training materials, tools, subsets and defaults for specific purposes • Need help to determine what is useful for the public health community
We Need You … • There are no perfect standards – so there is no point in waiting for one • The only good standards are heavily used standards • Real use identifies flaws and short-comings • Useful feedback suggests how to fix them