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

National Library of MedicineNational Library of MedicineNational Institutes of HealthNational Institutes of Health

U.S. Department of Health and Human ServicesU.S. Department of Health and Human Services

Public Health Data Standards: Partner PerspectivesPublic Health Data Standards: Partner PerspectivesFederal, State, and Local AgenciesFederal, State, and Local Agencies

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http://phpartners.orghttp://phpartners.org

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Key AcronymsKey Acronyms HIPAAHIPAA - - Administrative Simplification section of Health Administrative Simplification section of Health

Insurance Portability and Accountability Act of 1996Insurance Portability and Accountability Act of 1996 NCVHSNCVHS - - National Committee on Vital and Health National Committee on Vital and Health

Statistics, a long-standing (50+ years) advisory committee Statistics, a long-standing (50+ years) advisory committee to HHS, which was strengthened and expanded by HIPAAto HHS, which was strengthened and expanded by HIPAA

CHICHI - - Consolidated Health Informatics project, a cross-Consolidated Health Informatics project, a cross-agency eGov initiative led by HHS, DOD, and VAagency eGov initiative led by HHS, DOD, and VA

LOINCLOINC - - Logical Observations: Identifiers,Names,CodesLogical Observations: Identifiers,Names,Codes RxNormRxNorm - - Clinical drug nomenclature (ingredient + Clinical drug nomenclature (ingredient +

strength + dose form)strength + dose form) SNOMED CTSNOMED CT - - Systematized Nomenclature of Medicine Systematized Nomenclature of Medicine

Clinical Terms - formed by SNOMED and Read merger Clinical Terms - formed by SNOMED and Read merger

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Data content standards include:Data content standards include: Data elementsData elements, , e.g., gender, presenting complainte.g., gender, presenting complaint

Descriptions of entitiesDescriptions of entities, , e.g., birth certificatee.g., birth certificate

Messages,Messages, e.g., lab test ordere.g., lab test order

Allowable values for data elementsAllowable values for data elements, , which can be which can be entire entire ** vocabulariesvocabularies

** MappingsMappings between different value sets, between different value sets, e.g., between e.g., between SNOMED and ICD-9-CMSNOMED and ICD-9-CM

Information modelsInformation models that define the context in which standards that define the context in which standards are usedare used

Survey questionsSurvey questions and any coded responses and any coded responses Guideline, protocol, and algorithm formatsGuideline, protocol, and algorithm formats

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Basic AssumptionsBasic Assumptions

Electronic health data standards - Electronic health data standards - including including standard vocabularystandard vocabulary - are part of the information - are part of the information infrastructure needed for efficient:infrastructure needed for efficient: health care, clinical research, health services research, health care, clinical research, health services research,

public health, and emergency detection and responsepublic health, and emergency detection and response All of these should use common data standards to All of these should use common data standards to

the extent possiblethe extent possible Public health requirements must be fed into the Public health requirements must be fed into the

standards development processstandards development process Public health must participate in testing and Public health must participate in testing and

promoting the use of standardspromoting the use of standards

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Recommended steps to achieving U.S. Recommended steps to achieving U.S. health data standards (1990-2003)health data standards (1990-2003)

Establish a mechanism for designating U.S. Establish a mechanism for designating U.S. Standards - Standards - HIPAA, NCVHS, CHIHIPAA, NCVHS, CHI

Pick best available as starting point - Pick best available as starting point - NCVHS, CHINCVHS, CHI

Broaden participation in standards developmentBroaden participation in standards development

**Support development, maintenance, and low/no Support development, maintenance, and low/no cost distributioncost distribution

Promote use and improvementPromote use and improvement Coordinate development of selected standards to Coordinate development of selected standards to

achieve non-overlapping, interlocking setachieve non-overlapping, interlocking set

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Support development, maintenance, and Support development, maintenance, and low/no cost distribution – low/no cost distribution – NLM-led actionsNLM-led actions

19991999 – LOINC (lab tests/instrument – LOINC (lab tests/instrument observations) - contract supportobservations) - contract support

20022002 – RxNorm (clinical drugs) - direct – RxNorm (clinical drugs) - direct developmentdevelopment

20032003 – SNOMED CT contract & license for – SNOMED CT contract & license for U.S-wide use U.S-wide use (as distributed by NLM in (as distributed by NLM in UMLS)UMLS)

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NHII Agenda Meeting NHII Agenda Meeting (June 30–July 2, 2003)(June 30–July 2, 2003)

Standards RecommendationsStandards Recommendations

Accelerate adoption and use of standardsAccelerate adoption and use of standards Early adoption/feedback by Federal agencies, trading Early adoption/feedback by Federal agencies, trading

partners, grantees and contractorspartners, grantees and contractors Labeling data at the source Labeling data at the source Demonstration projects, cost-benefit researchDemonstration projects, cost-benefit research Financial incentivesFinancial incentives

Expedite enhancement, alignment, coordination, Expedite enhancement, alignment, coordination, and dissemination of standards and dissemination of standards

Continue to designate standardsContinue to designate standards

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Accelerate adoption and useAccelerate adoption and use

Promote use of standards in NIH-funded clinical Promote use of standards in NIH-funded clinical research networksresearch networks NIH Roadmap priority: NIH Roadmap priority: Re-engineering the clinical Re-engineering the clinical

research enterpriseresearch enterprise

Encourage manufacturers to include LOINC in Encourage manufacturers to include LOINC in device output/test kit packagingdevice output/test kit packaging Need help to identify manufacturers important to public Need help to identify manufacturers important to public

health communityhealth community

Collaborate with other HHS agencies to support Collaborate with other HHS agencies to support demonstration/testingdemonstration/testing

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NHII Agenda Meeting NHII Agenda Meeting (June 30–July 2, 2003)(June 30–July 2, 2003)

Standards RecommendationsStandards Recommendations

Accelerate adoption and use of standardsAccelerate adoption and use of standards

** Expedite enhancement, alignment, coordination, Expedite enhancement, alignment, coordination, and dissemination of standards, e.g., and dissemination of standards, e.g., Set up robust, nimble process for responding to Set up robust, nimble process for responding to

feedback from use of standardsfeedback from use of standards Align HL7 messages with vocabulariesAlign HL7 messages with vocabularies Support/co-ordinate inter-vocabulary mappingSupport/co-ordinate inter-vocabulary mapping Standardize procedures for updating and distributing Standardize procedures for updating and distributing

standards content (standards content (within UMLS Metathesaurus)within UMLS Metathesaurus)

Continue to designate standardsContinue to designate standards

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Unified Medical Language SystemUnified Medical Language System®® (UMLS (UMLS®®) ) MetathesaurusMetathesaurus®® - - a a vocabularyvocabulary database database

preservespreserves the the meaningsmeanings, hierarchical connections, , hierarchical connections, and other relationships between terms present in and other relationships between terms present in its source vocabulariesits source vocabularies

addsadds certain basic definitional certain basic definitional informationinformation about about each of its conceptseach of its concepts

establishesestablishes new relationshipsnew relationships between concepts between concepts and terms from different source vocabulariesand terms from different source vocabularies

distributes many vocabularies in a common, distributes many vocabularies in a common, explicit formatexplicit format

UMLS Source “Vocabularies”

Widely varying purposes, structures, properties, Widely varying purposes, structures, properties, but all are in essence “sets of valid values” for but all are in essence “sets of valid values” for data elements:data elements: HIPAA code sets, e.g., ICD-9-CM, CPTHIPAA code sets, e.g., ICD-9-CM, CPT NCVHS and CHI recommended clinical standards, e.g., NCVHS and CHI recommended clinical standards, e.g.,

SNOMED CT, LOINC, RxNormSNOMED CT, LOINC, RxNorm Thesauri for biomedical literature, e.g., MeSHThesauri for biomedical literature, e.g., MeSH Other lists of controlled terms, e.g., HL7 value setsOther lists of controlled terms, e.g., HL7 value sets

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2004AA UMLS Metathesaurus 2004AA UMLS Metathesaurus (Apr.2004)(Apr.2004)

~1,022,000 concepts1,022,000 concepts ~2,383,000 unique “strings” ~2,383,000 unique “strings” (Eye, Eyes, eye = (Eye, Eyes, eye =

3)3) ~3,030,000 source vocabulary terms~3,030,000 source vocabulary terms 111 source vocabularies111 source vocabularies 15 different languages15 different languages

Includes Includes activeactive SNOMED CT (English) SNOMED CT (English) Spanish will appear in 2004AB; Spanish will appear in 2004AB; inactiveinactive in 2004AC in 2004AC

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UMLS Metathesaurus Growth, 1992 --UMLS Metathesaurus Growth, 1992 --

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Expedite enhancement, alignment, Expedite enhancement, alignment, coordination, and dissemination of standardscoordination, and dissemination of standards

UMLSUMLS®® Metathesaurus Metathesaurus®® – common distribution – common distribution format/mechanism for CHI standards - HIPAA format/mechanism for CHI standards - HIPAA code setscode sets

2004AA - UMLS distribution format changes to 2004AA - UMLS distribution format changes to supportsupport Complete “Source Transparency”Complete “Source Transparency” Easier extraction of subsets for particular purposesEasier extraction of subsets for particular purposes Complete “change sets” from previous versionsComplete “change sets” from previous versions Sophisticated, purpose-specific inter-vocabulary Sophisticated, purpose-specific inter-vocabulary

mappingmapping

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Expedite enhancement, alignment, Expedite enhancement, alignment, coordination, and dissemination of standardscoordination, and dissemination of standards

Define boundaries and relationshipsDefine boundaries and relationships SNOMED CT / LOINC / RxNormSNOMED CT / LOINC / RxNorm HL7-CHI vocabulariesHL7-CHI vocabularies

Coded valuesCoded values Message segmentsMessage segments

Support/co-ordinate inter-vocabulary Support/co-ordinate inter-vocabulary mappingmapping CHI standards – HIPAA code setsCHI standards – HIPAA code sets Will need to align update schedulesWill need to align update schedules

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Expedite enhancement, alignment, Expedite enhancement, alignment, coordination, and dissemination of standardscoordination, and dissemination of standards

Expand documentation, user guides, Expand documentation, user guides, training materials, tools, subsets and training materials, tools, subsets and defaults for specific purposesdefaults for specific purposes

Need help to determine what is useful for the Need help to determine what is useful for the public health communitypublic health community

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We Need You …We Need You …

There are no perfect standards – so There are no perfect standards – so there is no point in waiting for onethere is no point in waiting for one

The only good standards are heavily The only good standards are heavily used standardsused standards Real use identifies flaws and short-comingsReal use identifies flaws and short-comings Useful feedback suggests how to fix themUseful feedback suggests how to fix them