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Health Information Technology Standards

Data Standards

Organizations that Develop Standards | Tutorials

Data Standards are documented agreements on representations, formats, and definitions of common data. Data standards provide a method to codify in valid, meaningful, comprehensive, and actionable ways, information captured in the course of doing business.

Data standards are developed and maintained by Standards Development Organizations (SDOs), Data Content Committees (DCCs), Standards Setting Organizations (SSOs), and Designated Standard Maintenance Organizations (DSMOs).

Data Standards
Examples of Standards Development Organizations, Data Content Committees & Designated Standard Maintenance Organizations Domains
AMA – CPT Editorial Board Clinical Procedure Terminology
ANA Nursing Terminology
ASC X12 Financial/Business Transactions Terminology
CDISC Clinical Trial Terminology
DICOM Digital Images
HL7 Healthcare, Public Health
NCHS/CMS – ICD-9-CM Coordination and Maintenance Committee Healthcare, Epidemiology, Health Statistics
IHTSDO Clinical Terminology (SNOMED-CT)
ISO Medicinal Products, Pharmaceutical Doses, Units, Common Terminology Services
LOINC Laboratory, Clinical Observations
NCPDP Pharmacy Terminology
NLM - UMLS Biomedicine, Healthcare, Drugs (RxNorm)
NUBC Hospital Billing Form
NUCC Professional Claims
OASIS Emergency Data
PHDSC Payer Typology
UCUM Units of Measures in Science, Engineering, Business

AMA CPT Editorial Board - American Medical Association Current Procedural Terminology

CPT was developed by the American Medical Association in 1966. These codes are used for the billing of medical procedures. Each year, an annual publication is prepared that makes changes corresponding with significant updates in medical technology and practice.

ANA – American Nursing Association

The ANA represents the nation's 2.9 million registered nurses (RNs) through its 54 constituent member associations. The ANA maintains the data sets and terminologies that support nursing practice.

ASC X12 - Accredited Standard Committee X12

ASC X12 develops standards for electronic interchange related to business transactions such as order placement and processing, shipping and receiving information, invoicing, payment and cash application data, and data to and from entities involved in finance, insurance, education, and state and federal governments.

PHDSC representatives participate at the ASC X12 to promote collaboration in the development of health data standards and to provide input to address the needs of public health.

PHDSC representatives also provide support for maintenance and updates to the ASC X12 837 Health Care Services Data Reporting Guide (Guide). The Guide was developed through the work of the PHDSC for use by public health agencies to collect data using national standards. It provides public health and other entities that conduct quality measurement, community assessment, and disease surveillance with a national standard for institutional health care service information. The guide is HIPAA compatible because data elements used for both claims payment and health services reporting are defined identically. The Guide also includes data elements essential for quality measurement and public health assessment purposes.

CDISC – Clinical Data Interchanges Standards Consortium

The CDISC Terminology Initiative was formalized in 2005 with the primary objective to define and support the terminology needs of the CDISC models across the clinical trial continuum including the development of controlled terminology for the SDTM (Study Data Tabulation Model), laboratory data, case reporting data, etc.

DICOM - Digital Imaging and Communications in Medicine

The DICOM Standards Committee develops and maintains international standards for communication of biomedical diagnostic and therapeutic information using digital images and associated data in cardiology, dentistry, endoscopy, mammography, ophthalmology, orthopedics, pathology, pediatrics, radiation therapy, radiology, etc.

HL7 - Health Level Seven

HL7 develops and maintains standards for the exchange, management, and integration of data that supports clinical patient care and the management, delivery, and evaluation of health care services. HL7 data standards, called data tables, are available for various clinical data components including, but not limited to, admission, transfer and discharge (ADT) records; clinical observations; laboratory test results; charge and billing information.

PHDSC members are active participants of the HL7 Public Health and Emergency Response Work Group, HL7 Attachments Work Group, HL7 Security Work Group, HL7 Electronic Health Record Technical Committee, Service Oriented Architecture Work Group, Child Health Work Group, HL7 Education Committee and multiple other HL7 committees and work groups. Most HL7 standards have been developed to serve the needs of clinical care of individual patients. PHDSC members work with HL7 to assure that the interests of public health are represented in the standards development process. This includes the development of standards for immunization information systems, vital statistics, environmental monitoring, public health surveillance & case investigation, outbreak detection & coordinated response, and food safety.

IHTSDO - International Health Terminology Standards Development Organization - SNOMED - Systemized Nomenclature of Medicine

The IHTSDO assumed ownership of SNOMED-CT (Clinical Terms) in 2007; it oversees the strategic direction and scientific maintenance of the Systematized Nomenclature of Medicine, (SNOMED) - a comprehensive, multi-axial, controlled terminology created for the indexing of the entire medical record.

The National Library of Medicine, a founding member of the PHDSC, is the U.S. member of the IHTSDO.

ISO - International Organization for Standardization

ISO is a network of national standards institutes from 140 countries working in partnership with international organizations, governments, industry, business, and consumer representatives.

ISO 215 Technical Committee on Health Informatics (ISO/TC 215) works on the standardization of health information and communications technology to allow for compatibility and interoperability between independent systems through the following Working Groups:

  • WG 1: Data Structure
  • WG 2: Messaging and Communications
  • WG 3: Health Concept Representation
  • WG 4: Security
  • WG 5: Health Cards
  • WG 6: Pharmacy and Medication
  • WG 7: Devices
  • WG 8: Business Requirements for Electronic Health Records

The ISO/TC 215 developed structures and controlled vocabularies for medicinal products (ingredients); pharmaceutical dose forms; units of presentation and routes of administration, measurements, laboratory tests; and common terminology services for the TC 215.

ISO/TC 215 Standards List

LOINC - Logical Observations Identifiers Names and Codes

The LOINC codes are universal identifiers for laboratory results and clinical observations, e.g., vital signs, outcomes management, and research. LOINC is a voluntary effort initiated in 1994 by the Regenstrief Institute, an internationally respected non-profit medical research organization associated with Indiana University. LOINC was developed as a response to the demand for electronic movement of data from laboratories to hospitals, physician's offices, and payers for clinical care and management purposes.

LOINC Tutorial

NCHS/CMS ICD-9-CM Coordination and Maintenance Committee – International Classification of Diseases

The NCHS/CMS ICD-9-CM Coordination and Maintenance Committee oversees the development and maintenance of the Clinical Modification (v.1 and 2) and the Procedures (v.3) of the current International Classification of Disease (ICD) version for the United States. The National Center for Health Statistics (NCHS) is primarily responsible for the clinical modification volumes), and the Center for Medicare & Medicaid Services (CMS) is primarily responsible for the procedures volume.

ICD is the international standard diagnostic classification for epidemiological and health management purposes. It is used to classify diseases and other health problems recorded on many types of health and vital records including death certificates and hospital records. These records provide the basis for the compilation of national mortality and morbidity statistics by World Health Organization (WHO) Member States. The first edition, known as the International List of Causes of Death, was adopted by the International Statistical Institute in 1893. WHO took over the responsibility for the ICD at its creation in 1948, when the Sixth Revision was published. The Sixth Revision included causes of morbidity for the first time.

ICD-9 - The International Classification of Diseases, Ninth Revision - was published by the WHO in 1977. ICD-9 contains diagnoses and procedures codes.

ICD-9-CM - The International Classification of Diseases, Ninth Revision, Clinical Modification was developed in the United States based on ICD-9 to provide a way to classify morbidity data for indexing of medical records, medical case reviews, and ambulatory and other medical care programs, as well as for basic health statistics. Volume 3 was developed for classifying procedures. ICD-9-CM is the official system of assigning codes to diagnoses and procedures associated with hospital utilization in the United States. The National Center for Health Statistics (NCHS) and the Centers for Medicare and Medicaid Services (CMS) are the U.S. governmental agencies responsible for overseeing all changes and modifications to the ICD-9-CM. WHO no longer publishes or distributes the ICD-9, which is now public domain.

ICD-10 was endorsed by the Forty-third World Health Assembly in May 1990 and came into use in WHO Member States in 1994. ICD-10 was implemented for mortality statistics in the United States starting with deaths occurring in 1999.

ICD-10-CM – NCHS has developed a clinical modification for ICD-10 as a replacement for ICD-9-CM, Volumes 1 and 2. CMS has developed ICD-10-PCS as a replacement for Volume 3 of ICD-9-CM.

NCHS is a founding member of the Public Health Data Standards Consortium. NCHS serves as the World Health Organization (WHO) Collaborating Center for the Family of International Classifications for North America and in this capacity is responsible for coordination of all official disease classification activities in the United States relating to the ICD and its use, interpretation, and periodic revision. The Collaborating Center also is responsible in North America for the WHO Family of International Classifications, which includes the International Classification of Functioning, Disability and Health (ICF). NCHS works in close collaboration with Statistics Canada and the Canadian Institute for Health Information, as well as the World Health Organization. The Collaborating Center promotes the development and use of ICD and the ICF in the United States and Canada.

NCPDP - National Council for Prescription Drug Programs

NCPDP is a Standards Development Organization whose mission is to create and promote data interchange standards for the pharmacy services sector of the health care industry.

NLM - National Library of Medicine - UMLS – Unified Medical Language System

The Unified Medical Language System® (UMLS) is developed by the US National Library of Medicine (NLM) as a knowledge resource to "understand" the meaning of the language of biomedicine and health. NLM produces and distributes the UMLS Knowledge Sources (databases) and associated software tools (programs) for use by system developers in building or enhancing electronic information systems that create, process, retrieve, integrate, and/or aggregate biomedical and health data and information, as well as in informatics research.

UMLS Metathesaurus is a multi-purpose and multi-lingual vocabulary database that contains information about biomedicine and health related concepts, their various names, and the relationships among them.

NUBC - National Uniform Billing Committee

The NUBC is one of the Designated Standard Maintenance Organizations (DSMO) formed to develop a single billing form and standard data set that could be used nationwide by institutional providers and payers for handling health care claims. NUBC maintains the integrity of the UB-92 data set.

Since 1999, the Public Health Data Standards Consortium has represented public health on the NUBC. PHDSC representatives at NUBC:

  • Federal Health Agencies
    Ms. Marjorie Greenberg, CDC National Center for Health Statistics
    Ms. Donnamaria Pickett, CDC National Center for Health Statistics (alternate)
  • State Health Agencies:
    Ms. Laura Dellehunt, New York State Department of Health
    Mr. Robert Davis, National Association of Health Data organizations (alternate)

NUCC - National Uniform Claim Committee

NUCC develops a standard data set for the uniform electronic claim form for use by the non-institutional health care community to transmit related claim and encounter information to and from all third-party payers. The NUCC is maintaining the Health Care Provider Taxonomy List, which is used in the transactions specified in the Health Insurance Portability and Accountability Act (HIPAA).

Since 1999, the Public Health Data Standards Consortium has represented public health on the NUCC. PHDSC representatives at NUCC:

  • Federal Health Agencies
    Ms. Marjorie Greenberg, CDC National Center for Health Statistics
    Ms. Donnamaria Pickett, CDC National Center for Health Statistics (alternate)
  • State Health Agencies
    Ms. Laura Dellehunt, New York State Department of Health
    Mr. Robert Davis, National Association of Health Data organizations (alternate)

OASIS – Organization for the Advancement of Structured Information Standards

OASIS is a not-for-profit consortium that drives the development, convergence and adoption of open standards for the global information society.

OASIS promotes industry consensus and produces worldwide standards for security, Cloud computing, SOA, Web services, the Smart Grid, electronic publishing, emergency management, and other areas. OASIS open standards offer the potential to lower cost, stimulate innovation, grow global markets, and protect the right of free choice of technology.

The mission of the OASIS Emergency Management Technical Committee (EM-TC)is to create incident and emergency-related standards for data interoperability. The EM- TC welcomes participation from members of the emergency management community, developers and implementers, and members of the public concerned with disaster management and response.

Current EM-TC standard efforts:
The Emergency Data Exchange Language (EDXL) is a broad initiative to create an integrated framework for a wide range of emergency data exchange standards to support operations, logistics, planning and finance:

  • EDXL Common Alerting Protocol (EDXL-CAP)
  • EDXL Distribution Element (EDXL-DE)
  • EDXL Hospital AVailability Exchange (EDXL-HAVE)
  • EDXL Resource Message (EDXL-RM)
  • EDXL Reference Information Model (EDXL-RIM)
  • EDXL Situation Reporting (EDXL-SitRep)
  • EDXL Tracking Emergency Patients (EDXL-TEP)

PHDSC – Payer Typology Sub-Committee

The PHDSC Payer Typology Committee has developed the Source of Payment Typology that has been approved by the Accredited Standards Committee X12 (ASC X12) as a reference external code source within the transaction standards. The Typology has been included in the ASC X12 Standards Development Workbook as Code Source 944 – Source of Payment Typology. It augments the internal code set maintained by ASC X12.

UMLS RxNorm provides standard names for clinical drugs both branded and generic (active ingredient + strength + dose form) and for dose forms as administered to a patient. NDCs (National Drug Codes) for specific drug products (where there are often many NDC codes for a single product) are linked to that product in RxNorm. RxNorm links its names to many of the drug vocabularies commonly used in pharmacy management and drug interaction software, including those of First Databank, Micromedex, MediSpan, Gold Standard Alchemy, and Multum. By providing links between these vocabularies, RxNorm can mediate messages between systems not using the same software and vocabulary. RxNorm is one of a suite of designated standards for use in U.S. Federal Government systems for the electronic exchange of clinical health information.

UCUM - Unified Code for Units of Measure

UCUM is a code system intended to include all units of measures being used in science, engineering, and business. The purpose is to facilitate unambiguous electronic communication of quantities together with their units. UCUM is inspired by and heavily based on ISO 2955-1983, ANSI X3.50-1986, and HL7's extensions called “ISO+” standards. The respective ISO and ANSI standards are both entitled “Representation of [...] units in systems with limited character sets” where ISO 2955 refers to SI and other units provided by ISO 1000-1981, while ANSI X3.50 extends ISO 2955 to include U.S. customary units.