Betsy L. Humphreys http:// www.nlm.nih.gov ~ http://phpartners.org

1. 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

2. http://phpartners.org

3. 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

4. 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

5. 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

6. 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

7. 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)

8. 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

9. 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

10. 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

11. 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

12. 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

13. 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

14. UMLS Metathesaurus Growth, 1992 --

15. 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

16. 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

17. 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

18. 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