1. Betsy L. Humphreys Betsy L. Humphreys http://www.nlm.nih.gov ~ http://phpartners.org www.nlm.nih.gov National Library of Medicine National Institutes of Health U.S. Department of Health and Human Services Public Health Data Standards: Partner Perspectives Public Health Data Standards: Partner Perspectives Federal, State, and Local Agencies

2. 2 http://phpartners.org

3. 3 Key Acronyms u HIPAA - Administrative Simplification section of Health Insurance Portability and Accountability Act of 1996 u NCVHS - National Committee on Vital and Health Statistics, a long-standing (50+ years) advisory committee to HHS, which was strengthened and expanded by HIPAA u CHI - Consolidated Health Informatics project, a cross- agency eGov initiative led by HHS, DOD, and VA u LOINC - Logical Observations: Identifiers,Names,Codes u RxNorm - Clinical drug nomenclature (ingredient + strength + dose form) u SNOMED CT - Systematized Nomenclature of Medicine Clinical Terms - formed by SNOMED and Read merger

4. 4 Data content standards include: u Data elements, e.g., gender, presenting complaint u Descriptions of entities, e.g., birth certificate u Messages, e.g., lab test order u Allowable values for data elements, which can be entire * vocabularies u * Mappings between different value sets, e.g., between SNOMED and ICD-9-CM u Information models that define the context in which standards are used u Survey questions and any coded responses u Guideline, protocol, and algorithm formats

5. 5 Basic Assumptions u Electronic health data standards - including standard vocabulary - are part of the information infrastructure needed for efficient: l health care, clinical research, health services research, public health, and emergency detection and response u All of these should use common data standards to the extent possible u Public health requirements must be fed into the standards development process u Public health must participate in testing and promoting the use of standards

6. 6 Recommended steps to achieving U.S. health data standards (1990-2003)   Establish a mechanism for designating U.S. Standards - HIPAA, NCVHS, CHI   Pick best available as starting point - NCVHS, CHI u Broaden participation in standards development u * Support development, maintenance, and low/no cost distribution u Promote use and improvement u Coordinate development of selected standards to achieve non-overlapping, interlocking set

7. 7 Support development, maintenance, and low/no cost distribution – NLM-led actions u 1999 – LOINC (lab tests/instrument observations) - contract support u 2002 – RxNorm (clinical drugs) - direct development u 2003 – SNOMED CT contract & license for U.S-wide use (as distributed by NLM in UMLS)

8. 8 NHII Agenda Meeting (June 30–July 2, 2003) Standards Recommendations u Accelerate adoption and use of standards l Early adoption/feedback by Federal agencies, trading partners, grantees and contractors l Labeling data at the source l Demonstration projects, cost-benefit research l Financial incentives u Expedite enhancement, alignment, coordination, and dissemination of standards u Continue to designate standards

9. 9 Accelerate adoption and use u Promote use of standards in NIH-funded clinical research networks l NIH Roadmap priority: Re-engineering the clinical research enterprise u Encourage manufacturers to include LOINC in device output/test kit packaging l Need help to identify manufacturers important to public health community u Collaborate with other HHS agencies to support demonstration/testing

10. 10 NHII Agenda Meeting (June 30–July 2, 2003) Standards Recommendations u Accelerate adoption and use of standards u * Expedite enhancement, alignment, coordination, and dissemination of standards, e.g., l Set up robust, nimble process for responding to feedback from use of standards l Align HL7 messages with vocabularies l Support/co-ordinate inter-vocabulary mapping l Standardize procedures for updating and distributing standards content (within UMLS Metathesaurus) u Continue to designate standards

11. 11 Unified Medical Language System® (UMLS®) Metathesaurus® - a vocabulary database u preserves the meanings, hierarchical connections, and other relationships between terms present in its source vocabularies u adds certain basic definitional information about each of its concepts u establishes new relationships between concepts and terms from different source vocabularies u distributes many vocabularies in a common, explicit format

12. UMLS Source “Vocabularies” u Widely varying purposes, structures, properties, but all are in essence “sets of valid values” for data elements: l HIPAA code sets, e.g., ICD-9-CM, CPT l NCVHS and CHI recommended clinical standards, e.g., SNOMED CT, LOINC, RxNorm l Thesauri for biomedical literature, e.g., MeSH l Other lists of controlled terms, e.g., HL7 value sets

13. 13 2004AA UMLS Metathesaurus (Apr.2004) 1,022,000 concepts u ~1,022,000 concepts u ~2,383,000 unique “strings” (Eye, Eyes, eye = 3) u ~3,030,000 source vocabulary terms u 111 source vocabularies u 15 different languages l Includes active SNOMED CT (English) n Spanish will appear in 2004AB; inactive in 2004AC

14. 14 UMLS Metathesaurus Growth, 1992 --

15. 15 Expedite enhancement, alignment, coordination, and dissemination of standards u UMLS® Metathesaurus® – common distribution format/mechanism for CHI standards - HIPAA code sets u 2004AA - UMLS distribution format changes to support l Complete “Source Transparency” l Easier extraction of subsets for particular purposes l Complete “change sets” from previous versions l Sophisticated, purpose-specific inter-vocabulary mapping

16. 16 Expedite enhancement, alignment, coordination, and dissemination of standards u Define boundaries and relationships l SNOMED CT / LOINC / RxNorm l HL7-CHI vocabularies n Coded values n Message segments u Support/co-ordinate inter-vocabulary mapping l CHI standards – HIPAA code sets l Will need to align update schedules

17. 17 Expedite enhancement, alignment, coordination, and dissemination of standards u Expand documentation, user guides, training materials, tools, subsets and defaults for specific purposes n Need help to determine what is useful for the public health community

18. 18 We Need You … u There are no perfect standards – so there is no point in waiting for one u The only good standards are heavily used standards l Real use identifies flaws and short-comings l Useful feedback suggests how to fix them