A. U.S. Organizations

1. Coordinators and promoters of standards development

ANSI - American National Standards Institute

A voluntary standards organization that serves as the coordinator for national standards in the United States and the U.S. member body to the International Organization for Standards. ANSI accredits standards committees and provides an open forum for interested parties to identify, plan, and agree on standards; it does not itself develop standards. Standards are developed by Standards Development Organizations (SDOs).

ANSI HISPP - ANSI Healthcare Informatics Standards Planning Panel

The Planning Panel was organized in 1991, with encouragement from Europe and leadership from the Agency for Health Care Policy and Research (AHCPR). Its purpose was to coordinate the various health data standards activities in the U.S.; such panels are ad hoc groups formed to address a perceived need. As of fall 1995, the Planning Panel disbanded, and a permanent Standards Board was established (see below). The Planning Panel had six subsidiary groups: Message Standards Developer Subcommittee; Codes and Vocabulary Task Group; Privacy, Security and Confidentiality Task Group; Identification Numbering Systems Task Group; and International and Regional Standards Subcommittee. The Board may assume all or some of these groups.

ANSI HISB - ANSI Healthcare Informatics Standards Board.

First meeting was February 23, 1996. As Standards Board, it is a standing organization within ANSI having planning and coordination responsibilities regarding both national and international health standards activities; stimulates the work of standards developers but does not itself develop standards. Currently voting members in Board decisions must be members of ANSI. At second meeting on June 20-21, 1996, four standing committees were established: Technical Coordination, International Development, Education and Promotion, and Legislative and Regulatory. The Technical Coordination Committee will include work groups on administrative operations; framework, models, architecture; vocabularies, identifiers and data sets; and security.

CPRI - Computer-Based Patient Records Institute

CPRI is a nonprofit membership organization committed to coordinating activities to facilitate and promote the routine use of computer-based patient records. The organization functions through its work groups: Codes and Structure; Confidentiality, Privacy and Security; CPR Systems Evaluation; and Professional and Public Education.

FESMCC - Federal EDI Standards Management Coordinating Committee

HIMA - Health Industry Manufacturers Association

National trade association representing more than 700 manufacturers of medical devices, diagnostic products and health information systems.

HIMSS - Healthcare Information and Management Systems Society

Provides leadership in health care for the management of systems, information and change, while striving for effective patient care through analysis and technology implementation. Membership consists of over 6000 professionals qualified to engage in the analysis, design and operation of health care information systems, management engineering, telecommunications and clinical professions.

HOST - Healthcare Open Systems and Trials

A nonprofit, broad-based industry consortium dedicated to accelerating the deployment of open, interoperable healthcare information systems.

MRI - Medical Records Institute

Founded in 1981, MRI=s primary mission is to promote electronic health record systems and identify building blocks and strategies for their implementation. MRI acts as a clearinghouse of information on national and international developments, conducts applied research and supports, coordinates and fosters the process of creating standards which cover the creation of electronic patient record systems. C. Peter Waegemann, Executive Director of MRI, is the first Chair of the ANSI HISB.

NIST - National Institute on Standards and Technology, formerly the Bureau of Standards

Located in Department of Commerce. Issues Federal Information Processing Standards (FIPS) Publication (PUB) on Electronic Data Interchange. Makes National Information Infrastructure grant awards.

WEDI - WorkGroup for Electronic Data Interchange

Established in late 1991, following a forum convened by Secretary of DHHS, Louis Sullivan, to address administrative costs in the nation=s health care system. Membership includes healthcare payer and provider organizations, standards development organizations, and others. Strongly supports work of ANSI ASC X12, NUBC and NUCC; does not itself develop standards.


2. Lead Standards Development Organizations

a. ANSI Accredited

ADA - American Dental Association

Sponsor and secretariat of Accredited Standards Committee MD156 for Dental Material, Instruments and Equipment. Four working groups for clinical information systems have been established to promote the concept of a dental computerized clinical work station.

ANSI ASC X12 - ANSI Accredited Standards Committee X12

This ASC is responsible for standardizing Electronic Data Interchange (EDI) transactions.

ASC X12N is the Insurance Subcommittee of X12; within this Subcommittee is a Task Group responsible for patient records and encounters. With NUBC, NUCC and WEDI advocates the existence of a standard electronic envelope to move data. Specific transaction sets developed by ASC X12 are: 834 for Health Care Enrollment and 837 for Health Care Claims; a health care encounter transaction for managed care has been integrated with the 837. These transactions are becoming the standards for EDI health care transactions in U.S.; eventually, U.S. may migrate to EDIFACT (see below) standards, if determined to meet U.S. needs.

ASTM - American Society for Testing and Materials

A nonprofit organization devoted to the development of voluntary full consensus standards for materials, products, systems and services and the promotion of related knowledge. Through the work of 134 standards-writing committees, publishes standards that range from Building Seals and Sealants, Soaps and Other Detergents to Computer-Based Patient Records.

ASTM Committee E31 - ASTM Healthcare Informatics Standards Committee

E31.12 - Subcommittee on Computer-Based Patient Records

E31.19 - Subcommittee on Vocabulary for Computer-Based Patient Record Content and Structure; approach is to call for a basic minimum content and extend the minimum content according to unique Adata views@ (a specific collection of a unique set of data required to meet users= needs, e.g., for prevention - risk factors, healthcare outcomes, mental health, etc.). Draft publication - E1384-91, A Standard Guide for Content and Structure of the Computer-Based Patient Record.

HL-7 - Health Level Seven

Formed in 1987 to produce a standard for hospital information systems. Represents an application protocol for electronic data exchange in healthcare environments (the Aseventh level@ is the application level). Issues within the application level include definition of the data to be exchanged, the timing of the interchange and communication of certain errors of the application. Primarily concerned with movement within institution of orders; clinical observations and data, including test results; admission, transfer and discharge records; and charge and billing information (coordinating here with ASC X12). HL-7 is the selected standard for the interfacing of clinical data for most institutions, and most RFPs require its use.

HIBCC - Health Industry Business Communications Council

Founded in 1984 to serve as the focal point for development of technical standards for the health care industry; fosters and promotes automated business communications, such as health industry bar codes.

IEEE - Institute of Electrical and Electronic Engineers

Formed to specify a set of robust and flexible communications standards for the exchange of data between heterogeneous healthcare information systems. Develops standards that are used for control and linking of medical instrumentation.

NCCLS - National Committee for Clinical Laboratory Standards

A nonprofit, educational organization that provides a communication forum for the development, promotion, and use of national and international standards and guidelines. Founded in 1968 and accredited by the American National Standards Institute, NCCLS has representation and participation from government, the medical industry, and the medical laboratory-related professions. The organization is based on the principle that voluntary consensus standards are essential for performing patient testing at the high level necessary for quality health care.

b. Non-Accredited

ACR-NEMA - American College of Radiology-National Electrical Manufacturers Association

Exists to produce standards for the communication of medical images.

DICOM - Digital Imaging and Communications in Medicine

Standards for the communication of diagnostic and therapeutic images (international in scope).

NCPDP - National Council for Prescription Drug Programs

Purpose is to create and promote third party prescription processing standards to the health care industry. Has defined a standard for sending prescription information from pharmacies to payers, for prescription management service, and for receiving approval and payment information almost in real time. Ninety percent of community pharmacies and 70% of nation=s outpatient prescriptions use the NCPDP standard.

NISO - National Information Standards Organization

Develops standards and promotes the voluntary use of technical standards in libraries and publishing and information services. Serves as U.S. technical advisory group to TC 46 of the International Organization for Standardization. Maintains 25 standards committees.

NUBC - National Uniform Billing Committee

Chaired by American Hospital Association and consists of equal representation of provider organizations (i.e., AHA and state affiliates, Healthcare Financial Management Association and Federation of American Health Systems) and payer organizations (Health Care Financing Administration [HCFA], Medicaid, CHAMPUS, Blue Cross and Blue Shield Association [BCBSA] and the Health Insurance Association of America [HIAA]. The Group Health Association of America/American Managed Care and Review Association (GHAA/AMCRA) more recently has become a member. NUBC is responsible for uniform data standards and formats for institutional health care services and providers; it developed and maintains the Uniform Bill (currently UB-92), which is a major vehicle for collecting the Uniform Hospital Discharge Data Set (UHDDS).

NUCC - National Uniform Claim Committee

Chaired by American Medical Association and consists of 12 voting members, including HCFA, Alliance for Managed Care, ANSI ASC X12N, BCBSA, AAHP, HIAA, Medical Group Management Association, National Association of Insurance Commissioners, National Association of Equipment Services, National Association of State Medicaid Directors, and NUBC. NUCC is developing a uniform claim for the noninstitutional health care community. Its predecessor, the Uniform Claim Form Task Force, co-chaired by AMA and HCFA, developed the HCFA 1500, which is a major vehicle for collecting the Uniform Ambulatory Care Data Set (UACDS). The goal of the NUCC is for the uniform claim to be equivalent across products, contracts and government programs.


c. Organizations developing performance measures and indicators

ACGIH - American Conference of Governmental Industrial Hygienists

ACGIH is an organization devoted to the development and improvement of worker health protection. The organization develops Treshold Limit Values (TLVs) for chemical and physical agents and Biological Exposure Indices (BEIs) for chemicals. TLVs and BEIs are intended for use by health professionals as guidelines or recommendations in the control of potential health hazards and are used internationally for establishing occupational standards.

Facct - Foundation for Accountability

Formed in 1995 as a purchaser and consumer driven organization to evaluate, endorse and promote a common set of patient-oriented measures of health care quality focused on the outcomes of care. Does not intend to become an auditing or accrediting organization. Published a Prototype Guidebook for Performance Measurement.

JCAHO - Joint Commission on Accreditation of Healthcare Organizations

Formed in 1951 by American College of Physicians, American College of Surgeons, American Hospital Association, American Medical Association, and Canadian Medical Association. Accredits hospitals and other healthcare organizations, including health care networks. In 1994 developed the Indicator Measurement System (IMSystem) to help health care organizations measure and improve their performance and to assist JCAHO in evaluating the performance of health care organizations as part of the survey and accreditation process. .

NCQA - National Committee for Quality Assurance

Formed in 1979 by GHAA/AMCRA to promote quality assurance, standards, and performance measurement. Now independent. Developed Health Plan Employer Data and Information Set (HEDIS) and Medicaid HEDIS. Committee on Performance Measurement currently developing HEDIS 3.0. NCQA also reviews and accredits managed care plans.

URAC - Utilization Review Accreditation Commission

Established in 1990 as an arm of AMCRA to promote consistent standards in the way that utilization review procedures are applied. Now independent. Organizations offering UR services can seek accreditation from URAC; standards apply to prospective, concurrent, and retrospective utilization review for inpatient admissions as well as outpatient procedures and services. In 1995 developed national network accreditation standards.


d. Departmental Organizations

DHHS Data Council

Established in 1995 as part of the Reinventing Government (REGO2) initiative. Membership consists of Heads of Operating Divisions and Staff Divisions that report directly at to the Secretary, as well as the Senior Advisor to the Secretary for Health Statistics (NCHS Director) and the HHS Privacy Advocate. Has taken responsibility for Vice President Gore=s charge to the Department to take the lead in interagency efforts focusing on four health areas of the National Information Infrastructure: data standards, privacy, telemedicine and enhanced health information for consumers. Also is overseeing the DHHS Survey Integration Plan. Serves as HHS liaison to the National Committee on Vital and Health Statistics and is the focal point for receiving NCVHS recommendations, integrating NCVHS input with other activities, making appropriate proposals to the Secretary, and making recommendations regarding future NCVHS membership. Focal point for coordinating with other federal departments on health and social data standards.

DHHS IRM Council and Investment Control Review Board

Establishes DHHS IRM policy, technology standards, and reviews all departmental information technology investments for providing funding action advice to the DHHS Chief Information Officer and the Secretary under the Information Technology Management Reform Act of 1996.

HISSB - Health Information and Surveillance Systems Board

The Centers for Disease Control and Prevention (CDC) Policy Board responsible for formulating and enacting policy concerning the planning, development, maintenance and use of integrated public health information and surveillance systems. The Board also coordinates standards development and representation of CDC to standards-setting organizations.

NCVHS - National Committee on Vital and Health Statistics

External Advisory Committee to Secretary and Data Council, DHHS; consists of 16 members with overlapping four-year terms. NCHS serves as Executive Secretary. Committee was established in 1949 in response to recommendation by the World Health Organization. Rechartered in January 1996 to include a more direct focus on data standardization and privacy activities.

WHO Collaborating Center for the Classification of Diseases for North America

Established in 1974 at the National Center for Health Statistics (NCHS). Has responsibility for the International Classification of Diseases family of classifications in the United States and in English-speaking North America.


B. International Organizations

CEN - Comite Europeen de Normalisation (European Committee for Normalization)

European Standards Committee; prepares as well as coordinates European standards in all sectors.

CEN/TC 251 - Technical Committee for Medical Informatics

Deals with healthcare information, modeling and medical records; terminology; communications and messages; security and privacy.

CCITT - International Telephone and Telegraph Communication Committee

Responsible for international communications standards.

EDIFACT - Electronic Data Interchange For Administration, Commerce and Transport

Goal is for a single international EDI standard flexible enough to meet the needs of government and private industry. United Nations/Economic Commission for Europe (ECE) appoints EDIFACT rapporteurs for North American, Western Europe, Eastern Europe, Australia/New Zealand, Asia and Africa. HCFA and NIST are working on a project to analyze and compare the healthcare EDI standards being developed by ASC X12 and those being developed by the UN/EDIFACT committee.

ILO - International Labour Organization

This organization has developed the ILO International Classification of Radiographs of Pneumoconioses (dust diseases of the lungs which are often occupationally related). The ILO system enables radiologists and other physicians to classify chest radiographs of persons with pneumoconiosis. The aim of this system is to standardize chest x-ray classification methods and facilitate international comparisions of pneumoconiosis statistics and research reports. It also can be used as a severity index for specific types of pneumoconioses.

ISO - International Organization for Standardization

Founded in 1946, one of the two major international non-treaty standards organizations; serves to coordinate and develop international voluntary consensus standards that facilitate world trade and contribute to public safety and health. ANSI is the official US member body. A proposal is under review to create an ISO Technical Committee on Healthcare Informatics.

ICE - International Collaborative Effort

Established by NCHS for infant mortality, aging, injury, and most recently, automated mortality statistics. Goal is to enable comparative analyses while increasing comparability of data collected.

WHO - World Health Organization and WHO Collaborating Centres for the Classification of Diseases

WHO is a specialized agency of the United Nations. Its responsibilities include the International Classification of Diseases. This is performed in conjunction with collaborating centers, established primarily on the basis of language, in North America (NCHS), England, Australia, Paris, Nordic countries (Uppsala), Moscow, Beijing, Caracas, Sao Paulo and Kuwait. Other countries, such as Japan, have recognized ICD offices.


C. State Organizations

NAHDO - National Association of Health Data Organizations

This nonprofit national membership organization was established in 1986 to help state data organizations effectively meet their mandated responsibilities and to promote the importance of state data organizations and public domain data sets. Dedicated to improving health care through the collection, dissemination, public availability and use of health data, NAHDO fosters collaboration among private and public data organizations and has been a strong supporter of standards for health data sets.

NAPHSIS - National Association of Public Health Statistics and Information Systems

Formerly the Association of Vital Registration and Statistics (AVRHS). Membership organization of State Vital Registrars, Directors of State Centers for Health Statistics and other health information systems professionals. Works closely with NCHS on the Vital Statistics Cooperative Program (VSCP) and developing the standard certificates and electronic standards for vital events.

NASIRE - National Association for State Information Systems

Works to improve the relevance and responsiveness of information systems and computerization to the broad range of social, ecological and economic problems faced by government at all levels; encourages the design, development and use of systems to improve decision making at all levels; establishes programs for the interchange of information.

NHIRC - National Health Information Resource Center

A joint effort of NAHDO and the Center for Health Research and Communications, Inc., to use the power of the World Wide Web of the Internet to provide a centralized, clearinghouse of information about health information systems, health data projects, services and products. Received an initial start-up grant from Robert Wood Johnson Foundation in March 1996.


D. Classification and Nomenclature Systems


FDA system of coding symbols for thesaurus of adverse reaction terms.

CPT-4 - Current Procedural Terminology

Created and maintained by the American Medical Association, which holds the copyright. Required for reporting of outpatient procedures and physician services in the United States.

GALEN - Generalized Architecture for Languages, Encyclopeadias and Nomenclatures in Medicine

European Union-funded project aiming to develop the foundations for the next generation of computer-based multilingual coding systems for medicine.

HCPCS - HCFA Common Procedure Coding System

CPT-4 expanded by HCFA to include non physician procedures and durable medical equipment and supplies.

ICD - International Classification of Diseases

Developed as a classification for causes of death in 1893. Required for all mortality coding in the United States. Currently ninth revision - ICD-9 - is in use; ICD-10 is scheduled to be implemented for mortality in 1998, with ability to back code to 1996 data.

ICD-9-CM - Ninth revision, clinical modification

Required for all morbidity coding of diseases in the United States.

ICD-9-CM, Vol. 3 - Ninth revision, clinical modification, procedure classification

The procedure classification required for reporting on all hospital procedures in the United States.

AICD-10 CM - Tenth revision, clinical modification@

An evaluation of the Tenth revision of ICD for morbidity applications is nearing completion. This evaluation project will include recommendations for modifications to ICD-10 so it can be used for clinical purposes in the United States. The recommendations must be reviewed by HCFA to determine the impact on Diagnosis Related Groups (DRGs) and other programmatic concerns. The earliest AICD-10-CM@ will be implemented in the United States will be October 1, 2000.

AICD-10 PCS - ICD-10 Procedure Coding System@

A procedure coding system to replace ICD-9-CM, Vol. 3; under development by HCFA through 3M-HIS. The earliest AICD-10 PCS@ will be implemented in the United States will be October 1, 2000.

ICIDH - International Classification of Impairments, Disabilities and Handicaps

Developed in the 1970s under WHO as a tool for the classification of the consequences of diseases. Belongs to the ICD family of classifications. WHO Collaborating Center for the Classification of Diseases for North America is coordinating U.S. and Canadian input to the revision of ICIDH, scheduled for 1998.

ICPC - International Classification of Primary Care

Developed, beginning in the 1970s, under the World Organization of Family Physicians (WONCA). Provides a system to classify the patient=s reason for encounter, the assessment or diagnostic interpretation of the patient=s problem by the provider, and the process of care, representing diagnostic and therapeutic interventions.

LOINC - Logical Observation Identifier Names and Codes

LOINC was developed at Regenstrief Institute for laboratory and clinical observation coding. It is available free-of-charge on the HL-7 web site and is being considered for adoption by several major laboratories.

NDC - National Drug Code

NDC is supported by NCPDP and is used almost universally for coding drugs.

Read Codes - coding system for general practitioners

This system was developed by Dr. James Read, a general practitioner in England in early 1980's. It is a mechanism for storing structured information about patients in individual, patient-based records. It has been adopted by the National Health Service as the standard coding system in primary care.

SNOMED International - Systematized Nomenclature of Human and Veterinary Medicine

A structured nomenclature and classification of the terminology used in human and veterinary medicine developed by the College of Pathologists and American Veterinary Medical Association. Terms are applied to one of eleven independent systematized modules.

Standardized Industry and Occupation Coding Systems

1) Bureau of Census 1990 industry and occupation codes

2) Office of Management and Budget: 1987 Standard Industrial and Occupational Classification Codes

3) U.S. Department of Labor : Dictionary of Occupational Titles

UMLS - Unified Medical Language System

Under development by the National Library of Medicine as a standard health vocabulary. Includes a Metathesaurus, a Semantic Network and an Information Sources Map. The purpose of the UMLS is to help health professionals and researchers retrieve and integrate electronic biomedical information from a variety of sources, irrespective of the variations in the way similar concepts are expressed in different sources and classification systems. Has incorporated most source vocabularies. Large-scale testing is taking place.


E. Organizations Maintaining Disease Classification Systems

AMA - American Medical Association

Developed, maintains and updates CPT; holds the copyright on the system.

CAP - College of American Pathologists

Developed, maintains and updates SNOMED; holds the copyright on the system.

Cooperating Parties -NCHS, HCFA, AHIMA (American Health Information Management Association, formerly the American Medical Records Association), and AHA (American Hospital Association)

A federally-recognized informal partnership formed in 1985 to serve as a clearinghouse for answering questions on ICD-9-CM and to develop educational materials and programs on ICD-9-CM. Coding Clinic is the publication by AHA based on the accumulation of coding questions and coding guideline development. The AHA Editorial Advisory Board, including representatives from hospitals, physician organizations, health data systems, HCFA and NCHS, supplements the work of the cooperating parties.

EAB - Editorial Advisory Board

(See Cooperating Parties)

ICD-9-CM C&M Committee - ICD-9-CM Coordination and Maintenance Committee

Established in 1985 to provide a mechanism for reviewing and updating the ICD-9-CM Classification System. Co-chaired by NCHS (for diagnoses) and HCFA (for procedures); open public forum that meets twice a year and receives proposals for modifications and additions to ICD-9-CM. New codes are implemented every October 1. This process was endorsed by the World Health Organization ICD-10 Revision Conference as a model for updating and maintaining ICD-10.

NLM - National Library of Medicine

Responsible for development of the UMLS.

F. Core Health Data Sets

Core Health Data Elements

A list of 42 core health data elements recommended by the National Committee on Vital and Health Statistics in August 1996 to the HHS Data Council for standardization. The recommendations currently are under review within the Department.

LTCCUDS - Long-Term Care Client Uniform Data Set

A uniform data set for long-term care clients, primarily focused on nursing homes, developed by NCVHS and Department in 1980's; never promulgated.

McData - Medicaid-Medicare Common Data Initiative

A core data set for managed care encounters developed by an internal HCFA Committee in 1995 for states (e.g., Medicaid agencies) and managed care plans. The proposed data set was distributed for comments in September 1995 and is under HCFA review.

MDS - Minimum Data Set for Nursing Facility Resident Assessment and Care Screening

A data set mandated by the Omnibus Budget Reconciliation Act of 1987 to assess and improve care for nursing home residents; developed by HCFA under contract and implemented by HCFA in 1991.

UACDS - Uniform Ambulatory Care Data Set

A core data set for ambulatory encounters developed by NCVHS in late 1970's and revised by NCVHS and Department several times; never officially promulgated but widely disseminated.

UHDDS - Uniform Hospital Discharge Data Set

A core data set for hospital encounters developed in early 1970's by NCVHS and revised by NCVHS and Department several times; most recent official version promulgated by Department in 1985.

Return to index