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
http://phpartners.org
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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 crossagency 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

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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
models that define the context in which standards
are used
 Survey
questions and any coded responses
 Guideline, protocol, and algorithm formats
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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
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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
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Support development, maintenance, and
low/no cost distribution – NLM-led actions
– 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)
 1999
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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
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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
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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
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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
 establishes new relationships between concepts
and terms from different source vocabularies
 distributes many vocabularies in a common,
explicit format
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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
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UMLS Metathesaurus Growth, 1992 --
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Expedite enhancement, alignment,
coordination, and dissemination of standards
Metathesaurus® – common distribution
format/mechanism for CHI standards - HIPAA
code sets
 2004AA - UMLS distribution format changes to
support
 UMLS®




Complete “Source Transparency”
Easier extraction of subsets for particular purposes
Complete “change sets” from previous versions
Sophisticated, purpose-specific inter-vocabulary
mapping
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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

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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
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We Need You …
are no perfect standards – so
there is no point in waiting for one
The only good standards are heavily
used standards
There
Real use identifies flaws and short-comings
 Useful feedback suggests how to fix them

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