Health Care Informatics Standards Activities of Selected Federal Agencies

A Compendium

Sponsored by: Agency for Health Care Policy and Research, September 1999

The Agency for Health Care Policy and Research (AHCPR) is producing this report to compile health care informatics standards activities that have been voluntarily reported by selected Federal agencies.


U.S. Department of Health and Human Services
   Agency for Health Care Policy and Research
   Centers for Disease Control and Prevention and Agency for Toxic Substances and Disease Registry
   Centers for Disease Control and Prevention, National Center for Health Statistics
   Food and Drug Administration
   Health Care Financing Administration
   Health Resources and Services Administration
   Indian Health Service
   National Institutes of Health, National Cancer Institute, International Cancer Information Center
   National Institutes of Health, National Library of Medicine
U.S. Department of Defense
   Office of the Assistant Secretary of Defense (Health Affairs)
U.S. Department of Energy
   Office of Occupational Safety and Health Policy
U.S. Department of Justice
   Office of Justice Programs, Bureau of Justice Statistics
U.S. Department of Labor
   Bureau of Labor Statistics
U.S. Department of State
   Division of Medical Informatics
U.S. Department of Transportation
   National Highway Traffic Safety Administration, Emergency Medical Services Division
U.S. Department of Veterans Affairs
   Veterans Health Administration
Consumer Product Safety Commission
Office of Personnel Management
Social Security Administration


AHCPR has undertaken this initiative to assist:

  1. The Secretary of Health and Human Services in making health data standards choices for administrative simplification (mandated under Public Law 104-191).
  2. The Department of Health and Human Services (HHS) Data Council in its oversight of health data standards.
  3. The White House in meeting the goals of the Administration to promote the widespread use of the National Information Infrastructure (NII) in health care.

The report also provides information to assist HHS in responding to a request of Vice President Al Gore (March 1995) to improve the coordination of Federal activities in health care data standards development.

As part of its work plan, the Data Council is undertaking this Federal coordination through its Committee on Health Data Standards by documenting existing Federal health data standards activities. This report complements a current review, also provided by AHCPR, of the activities of the major private-sector standards development organizations: "Current Activities of Selected Health Care Informatics Standards Organizations: A Compilation," December 1999.

The information presented in this report has been solicited from Federal agencies that are among the most active in drafting and promulgating standards for health care data collection and reporting. Each of these organizations was contacted and asked to provide information about the following 10 areas:

  1. A contact person.
  2. Data-related programs.
  3. Standards employed.
  4. Purpose of the standards.
  5. Subject areas covered.
  6. Standards activities.
  7. Data dictionaries.
  8. Publications and other disseminations.
  9. Participation in American National Standards Institute (ANSI)-accredited and other standards development organizations.
  10. Health Insurance Portability and Accountability Act (HIPAA 1996)-related activities.

This effort was followed up with onsite interviews and agency opportunities to revise the information provided prior to publication of this document. This study does not include all Federal agencies and all their health care standards activities.

The compendium project team has been in contact with a number of agencies that maintain databases containing health statistics and health-related data in addition to the ones submitting information for this edition of the compendium. These agencies include the Bureau of the Census, the Coast Guard, the Bureau of Prisons, the Central Intelligence Agency, the Immigration and Naturalization Service, the Federal Emergency Management Administration (FEMA), the Environmental Protection Agency (EPA), the Occupational Safety and Health Administration (OSHA), and the National Park Service. AHCPR will set up procedures to allow these and other agencies to submit information after the publication of this report.

In the fall of 1998, all of the compendium contributors were contacted and asked to see if their contributions needed any final corrections or updates. At the same time these contacts were being made, AHCPR also invited the agency contacts to a contributors meeting. That meeting was held at the Hyatt Regency Hotel in Bethesda, MD, on January 12, 1999.

This meeting had several objectives. One was to allow the agency representatives to obtain a more detailed understanding of current standards activities than they could obtain from the overviews provided in the compendium. In addition, the meeting provided the representatives with an opportunity to identify the key near-term informatics challenges that need to be addressed by Federal agencies. AHCPR has produced a report that summarizes the participant discussions at this meeting.

Both this report and the summary meeting's report are available online on AHCPR's Web site. The HHS Data Council's Web page is at Information on HHS administration simplification activities (associated with Public Law 104-191) may be found at General program activities of HHS agencies can be found at Information on NII is available at

The collection and compilation of this information in this document was carried out by The Washington Consulting Group, Inc. (WCG), under the direction of J. Michael Fitzmaurice, Ph.D. The diligent work of Cyrus Baghelai and Richard Hilton both of WCG is greatly appreciated. Suggestions for improvements or revisions are welcome and may be made to AHCPR by contacting:

J. Michael Fitzmaurice, Ph.D.
Senior Science Advisor for Information Technology
Immediate Office of the Administrator
Agency for Health Care Policy and Research
540 Gaither Road, Suite 3000
Rockville, MD 20850
Phone: (301) 427-1227
Fax: (301) 427-1201

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Selected Federal Agencies

U.S. Department of Health and Human Services
Agency for Health Care Policy and Research


J. Michael Fitzmaurice, Ph.D.
Senior Science Advisor for Information Technology
Immediate Office of the Administrator
Agency for Health Care Policy and Research
540 Gaither Road, Suite 3000
Rockville, MD 20850
Phone: (301) 427-1227
Fax: (301) 427-1201

Data-Related Programs

AHCPR undertakes the Medical Expenditure Panel Survey (MEPS), which collects data on the specific services that Americans use, how frequently they use them, the cost of these services, and how they are paid, as well as data on the cost, scope, and breadth of private health insurance held by and available to the U.S. population. AHCPR, under the Healthcare Cost and Utilization Project (HCUP), maintains information on inpatient hospital stays, and the HIV Cost and Service Utilization Survey (HCSUS) collects cost and utilization data about the services used by persons with human immunodeficency virus (HIV).

For over 28 years, AHCPR has funded the development, application, and use of health information systems, including the MUMPS programming language and COSTAR (an early computerized ambulatory record system).

AHCPR and the National Library of Medicine (NLM) are in partnership to support applications of the electronic medical record—for example, defining laboratory (e.g., LOINC: Logical Observations, Identifiers, Names, and Codes) and imaging standards, and developing and testing common medical terminology for the electronic patient record. AHCPR funds studies of specific applications of computerized clinical decision support systems for health providers as a member of the White House Computing, Information, and Communications Research and Development program. AHCPR also participates in HHS development of core data sets and in health services research activities on critical data issues such as health data standards and the confidentiality of personal health information.

Standards Employed

International Classification of Diseases, Ninth Revision, Clinical Modification (ICD-9-CM), diagnosis codes and procedure codes and Physicians' Current Procedural Terminology, Fourth Revision (CPT-4) and Health Care Financing Administration Current Procedural Coding System (HCPCS) procedures codes for ambulatory procedures are used in AHCPR's large-scale surveys of health services utilization and expenditures for U.S. households and for persons with HIV. AHCPR grantees also use these codes to study the linking of electronic patient record information with medical knowledge for computerized decision support systems to improve the quality of care. The data standards used in data collected and linked by AHCPR are based on those employed by the Bureau of the Census, the American Hospital Association, the Health Resources and Services Administration (Area Resource File), the National Center for Health Statistics, and codes for clinical diagnosis and procedures (such as ICD-9, ICD-9-CM, and CPT-4) in their data sets.

Purpose of Standards

To make more uniform in meaning the health data collected, exchanged, and analyzed among hospitals, physicians, other health decisionmakers, and researchers across geographical areas and institutional boundaries.

The standards that AHCPR uses are intended to facilitate data analysis and use by ensuring greater comparability, quality, and accuracy of health care data. In turn, the use of standards increases the automation of health care data for direct patient care, quality measurement, and research. Further, by promoting uniform, accurate, and automated health care data, AHCPR advances medical research (including medical effectiveness and cost effectiveness research) and improves the efficiency of the private sector health care delivery system and quality improvement measurement.

Subject Areas Covered

The standards cover such data as diagnosis and procedure codes; demographic, employment, economic, health status, and other characteristics of survey respondents; the use and cost of services provided by various health care providers; laboratory and imaging standards; and clinical and administrative data for use in computer-based patient record systems and in decision support systems.

Standards Activities

Nationally, AHCPR promotes the coordination of health care data standards by supporting the meetings of ANSI and the Healthcare Information Standards Board (HISB) and by participating in standards meetings as resources permit. Internationally, AHCPR promotes data standards by sponsoring meetings of standards experts (primarily U.S., European, Japanese, Canadian, and Australian) coordinated through HISB, and by exchanges of information about current standards activities through research conferences and government liaison. AHCPR participates in HISB's Vocabulary and Codes Working Group and chairs its Legislative and Regulatory Standing Committee.

The purpose of AHCPR support of ANSI HISB is to increase the coordination of private and public sector health data standards activities, to promote the exchange of information with the standards development organizations (SDOs) of other countries, and to work toward international coordination of health data standards.

AHCPR sponsors and participates in national research conferences to advance the development and use of data standards in electronic medical patient records and health services research. AHCPR staff serve on a number of HHS and national standards organizations and committees, including the American Medical Informatics Association, International Medical Informatics Association, Computerized Patient Record Institute, American Society for Testing and Materials (ASTM), ANSI, HISB, and the Office of Management of Budget's Interagency Committee for the Review of Racial and Ethnicity (Data) Standards. AHCPR staff supported the development of Data Elements for Emergency Department Systems, Release 1.0 (1997) by the Centers for Disease Control and Prevention.

The AHCPR administrator currently co-chairs the HHS Data Council and participates in its Committee on Health Data Standards with AHCPR staff participating in its Committee on International Health Data Collaboration, its Interagency Health Privacy Working Group, and its joint Working Group on Telehealth. Under the Committee on International Health Data Collaboration, AHCPR represents HHS on the Group of Seven Nations (G7) Global Information Infrastructure/Health—Subproject 5—Enabling Mechanisms.

AHCPR and the NLM have collaborated to undertake a large-scale vocabulary test to determine how well the set of existing vocabularies found in the Metathesaurus of the Unified Medical Language System covered the clinical concepts found in computer-based patient records. The results may be found in:

Humphreys BL, McCray AT, Cheh ML. Evaluating the coverage of controlled health data terminologies: report on the results of the NLM/AHCPR large scale vocabulary test. Journal of the American Medical Informatics Association, 1997;4(6):484-500.

Data Dictionaries

AHCPR uses a number of generally available standard data dictionaries, formats, and coding systems, in developing its data surveys and other standards activities. These include ICD-9, CPT-4, NLM's Metathesaurus, and the U.S. Census Bureau's dictionaries. AHCPR maintains data dictionaries for its major surveys—MEPS and HCSUS.

Publications and Other Dissemination

  • "Current Activities of Selected Health Care Informatics Standards Development Organizations (A Compilation)," December 1999.
  • "Healthcare Informatics Standards Activities of Federal Agencies (A Compendium)," September 1996.

AHCPR also publishes numerous reports from MEPS and the HCSUS. Descriptions of these standards activities and uses are contained in various publications.

For additional information, the AHCPR Clearinghouse's phone number is (800) 358-9295.

Participation in ANSI-accredited and Other Standards Development Organizations

AHCPR often participates in Health Level 7 (HL7), ASTM, Workgroup for Electronic Data Interchange (WEDI), and X12N meetings as an observer, liaison, and consultant. AHCPR is a member of the Technical Advisory Panel for the development of the ICD-10-Procedure Coding System led by the Health Care Financing Administration (HCFA). The panel completed its work in 1998. AHCPR participated in the development of the Data Elements for Emergency Department Systems (DEEDS) data set by the Centers for Disease Control and Prevention in 1996-97.

HIPAA 1996-Related Activities

  • Key Personnel Assigned to HIPAA Implementation:

J. Michael Fitzmaurice is co-chair of the Infrastructure and Crosscutting Implementation Team (IXIT) that oversees the other HIPAA implementation teams, and a member of the Coding and Classification Implementation Team and the HHS HIPAA Outreach Working Group. He is the AHCPR representative to the HHS Committee on Health Data Standards to which the IXIT reports and an AHCPR alternate to the HHS Data Council through which the HIPAA standards recommendations pass on their way to the Secretary.

Dr. Fitzmaurice is co-chair of the staff to the Computerized Patient Working Group of the National Committee on Vital and Health Statistics (NCVHS). This working group is charged by NCVHS with preparing the HIPAA-mandated report to "study the issues related to the adoption of uniform data standards for patient medical record information and the electronic exchange of such information" and "to report to the Secretary not later than 4 years after the date of the enactment of the Health Insurance Portability and Accountability Act of 1996 recommendations and legislative proposals for such standards and electronic exchange"—(HIPAA Section 263). The report is due in August 2000.

Stanley Edinger is a member of the Coding and Classification Implementation Team and the lead staff member of the NCVHS Quality Working Group.



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U.S. Department of Health and Human Services
Centers for Disease Control and Prevention (CDC) and Agency for Toxic Substances and Disease Registry


Ronald R. Fichtner, Ph.D.
Chief, Office of Prevention Informatics
National Center for HIV, STD, and TB Prevention
Phone: (404) 639-8040
Fax: (404) 639-8603

Data-Related Programs

CDC is the Nation's primary prevention agency, responsible for preventing disease, injury, and disability, and thereby promoting health and quality of life. In collaboration with public health partners and others, it focuses on the prevention of infectious diseases, chronic diseases, injuries, workplace hazards, birth defects and disabilities, and environmental hazards.

CDC is challenged by the ongoing need to provide timely, useful, and epidemiologically sound information to assist the public health community in developing prevention programs and interventions. A broad variety of data collection methods and systems is in place to help meet this challenge.

At least seven categories of information are needed by CDC:

  • Reports of health events affecting individuals.
  • Vital statistics on the entire population.
  • Information on the health status, risk behaviors, and experiences of populations.
  • Information on potential exposure to environmental agents.
  • Information useful to public health but obtained by nonpublic sources.
  • Information on existing public health programs.
  • Information on the health care system and its overall effects on health.

Standards Employed

CDC has begun an overall process of identifying where relevant surveillance and information systems need standards and deciding what those standards should be. However, a few CDC programs have begun formal consideration of standards in selected areas. The National Immunization Program (NIP) at CDC worked with HL7 to include standard query, response, and update messages for immunization records in HL7's version 2.3, which was published in March 1997. These messages allow standard transmissions of immunization data from health care providers to immunization registries and from one registry to another. NIP considers the establishment of these HL7 messages to be an important factor in the solution to the technical challenges of the registry project.

The National Center for Chronic Disease Prevention and Health Promotion has also worked with HL7 and is involved in a process similar to NIP with cancer registries. A meeting was held August 19-21, 1998, with participants from CDC, the North American Association of Central Cancer Registries, and HL7 representatives to "explore the feasibility of a standardized electronic exchange protocol for use in cancer registry systems." The summary report for the meeting, "Working Toward Implementation of HL7 in NAACCR Information Technology Standards Meeting," was produced in October 1998.

The National Center for Injury Prevention and Control (NCIPC) produced recommended specifications for select data elements in emergency department systems. These specifications are outlined in DEEDS, Release 1.0. In regard to the standards used for data elements, as stated in the purpose and scope of the DEEDS document: "To the fullest extent possible the specifications for individual data elements in Release 1.0 incorporate existing health data standards, particularly standards for computer-based records."

CDC, in partnership with the Association of Public Health Laboratories, the Association of State and Territorial Health Officials, and the Council of State and Territorial Epidemiologists, recently sponsored the "Electronic Reporting of Laboratory Information for Public Health," a conference held on January 7-9, 1999, in Decatur, GA. The objectives of the conference were to (1) share recent experiences of States, laboratories, and vendors in implementing laboratory reporting, (2) examine key issues for expanded laboratory reporting, and (3) design strategies for expanded adoption, use, and evaluation of electronic reporting. Other issues raised at the conference were the need to develop unified data elements, specific laboratory tests (and codes), and HL7 specifications for data transmission between labs and State/local health departments.

Purpose of Standards

CDC supports standards because they are seen as critical to the creation of integrated public health surveillance and health information systems, recently identified by strategic planning as CDC's highest priority.

Subject Areas Covered

Areas to be considered for standards development may include common data elements/standard core variables, software development, transmission, data access, and confidentiality/security. It is intended that standards will eventually influence key areas necessary for integrated surveillance and information systems, potentially affecting the broad array of those systems supported by CDC.

Standards Activities

To serve the purpose of formulating and enacting policy concerning the planning, development, maintenance, and use of integrated public health information and surveillance systems, CDC has formed the Health Information and Surveillance Systems Board (HISSB). CDC's principal organizations are represented on HISSB, which has major subcommittees devoted to general standards and liaison with standards bodies, standards related to Internet applications, and coordination of surveillance activities, to name a few. A pre-existing committee of CDC information resource managers, responsible for setting standards in related areas such as computing platforms, connectivity, and information dissemination, is represented on HISSB.

A subset of HISSB, the Standards and Liaison (S&L) Committee, has been heavily involved in the development of standard data elements and definitions for use primarily in CDC health department systems. The S&L Committee has tackled issues (for core data elements) such as definition of concepts and categories, representation for internal storage, collection mechanisms, user interface, and the dissemination of reports and public use data sets. The recommendations made by the S&L Committee will in inevitably affect the development of new CDC-sponsored systems and projects.

In an effort to influence existing systems, the S&L Committee has worked closely with members of the HISSB Integration Project. The integration project is an effort "to tie together the current myriad separate systems used for public health surveillance into a comprehensive solution that facilitates the efficient collection, analysis, and use of data and the sharing of computer software solutions across disease-specific program areas." Members of the integration project have worked closely with the S&L Committee to ensure that proposed standards closely follow the recommendations made in the "Core Data Elements Implementation Guide" (CDE).

Data Dictionaries

The S&L Committee has prepared a common data elements document that details CDC's proposed approach to data collection, storage, electronic data interchange, and dissemination of common data elements approaches used in health information and surveillance systems. The guide has been vetted to external partners and can be downloaded from Comments and feedback concerning this document and the proposed standards are welcome.

Publications and Other Dissemination

CDC has numerous publications, including Morbidity and Mortality Weekly Report and Emerging Infectious Diseases, both of which are available online. "Integrating Public Health Information and Surveillance Systems," which describes the basic considerations for formation of HISSB, is available upon request. The Core Data Elements Implementation Guide is available in hard copy and can be downloaded from the Internet at

Participation in ANSI-accredited and Other Standards Development Organizations

Susan Abernathy, a member of the NIP staff, was elected to the HL7 Board of Directors in August 1998.

HIPAA 1996-Related Activities

  • Key Personnel Assigned to HIPAA Implementation:

    HISSB, Executive Secretariat

  • Reviews of HIPAA-Related Transaction Standards Needs and Efforts:

    HISSB, Executive Secretariat

  • Plans or Planning Groups Established to Implement HIPAA Changes:



HISSB will oversee the formulation of policy related to standards by instituting and orchestrating a process that will facilitate discussion, develop consensus, and legitimize outcomes. Organizational liaisons with standards bodies have begun and are seen as critical to these bodies developing standards that are informed by the future needs of the public health community.

Links With Other Agencies

Strong internal linkages exist with CDC's National Center for Health Statistics. External linkages are being developed through participation on the HHS Data Council's Committee on Health Data Standards, and with organizations that maintain or have access to data on health care services and utilization, such as those involved in delivering managed care.

Organizational Memberships in Standards Development Organizations

  • HL7—Susan Abernathy, National Immunization Program
    Denise Koo, M.D., Epidemiology Program Office
    Dan Pollock, National Center for Injury and Prevention Control
  • ANSI X12—Roy Gib Parrish, Epidemiology Program Office
  • Computer-based Patient Record Institute (CPRI)—Ed Kilbourne, M.D., National Immunization Program Office
Page last reviewed December 1999
Internet Citation: Health Care Informatics Standards Activities of Selected Federal Agencies: A Compendium. December 1999. Agency for Healthcare Research and Quality, Rockville, MD.