Since a 1996 compendium of Federal informatics activities was completed, it has been revised and updated as needed by those agencies. In addition, other agencies have contributed information on their activities. This summary describes the meeting held in January 1999 so the contributors could learn more about current activities than they could from the compendium itself and so that agency representatives could identify informatics challenges to be addressed by Federal agencies.
Select to access the 1999 compendium online.
Challenges in the Near Future
In September 1996, the Agency for Health Care Policy and Research (AHCPR) produced a compendium covering health informatics-related initiatives in the Federal Government. A wide range of Federal agencies and offices contributed to the compendium, "Health care Informatics Standards Activities of Selected Federal Agencies."
Since then, AHCPR staff members have been in contact with designated contacts of the contributor agencies. During 1997 and 1998, those contacts were requested, on an as needed basis, to update their contributions to the compendium. In addition, the contributors were requested to provide information on any agency initiatives related to the implementation of the Health Insurance Portability and Accountability Act (HIPAA) of 1996. These periodic contacts resulted in several draft revisions of the compendium over 1997-99.
During this same time, AHCPR staff contacted agencies that had not contributed to the 1996 document, resulting in information from several agencies not in that document. These agencies included:
- The Consumer Product Safety Commission.
- The Bureau of Labor Statistics.
- The Department of Energy.
Contributions from these agencies were in the 1997 and 1998 draft documents.
In fall 1998, all compendium contributors were asked to rewrite and update their contributions. At the same time, AHCPR invited agency contacts to a meeting for contributors. That meeting was held at the Hyatt Regency Hotel in Bethesda, MD, on January 12, 1999.
The meeting had several objectives:
- Allow agency representatives to obtain a more detailed understanding of current standards activities than they could obtain from the overviews in the compendium.
- Provide representatives with an opportunity to identify the key near-term informatics challenges that need to be addressed by Federal agencies.
This summary of the meeting describes its discussions and lists challenges identified by participants.
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The opening three presentations gave overviews of the current status of data standards development, both nationally and internationally. The first presentation was by J. Michael Fitzmaurice, Ph.D. of AHCPR. Dr. Fitzmaurice is the Senior Science Advisor for Information Technology in the Immediate Office of the Administrator, AHCPR.
In his opening remarks, Dr. Fitzmaurice discussed the context for Federal health care data standards development. He noted that in this area Federal agencies operate under several mandates, including a directive from the Office of Management and Budget (OMB) stipulating that Federal agencies are to use private-sector standards where feasible. In addition, Vice-President Al Gore has directed Health and Human Services Secretary Donna Shalala to improve Federal agency coordination for health data standards.
Federal agencies working with health care data must also eventually meet the requirements of the White House's National Information Infrastructure Initiative as well as the implementation requirements of HIPAA. Dr. Fitzmaurice noted that in 1998 considerable progress had been made in establishing HIPAA standards. Four notices of proposed rule making (NPRMS) were published in 1998, including those for:
- Claims and codes.
- A national provider identifier.
- An employer identifier.
- A security standard.
A standard for the health plan identifier is to be published soon.
Peter Waegemann, Executive Director of the Medical Records Institute, made the next presentation. He also serves as the Chair of the ANSI Health care Informatics Standards Board (HISB) and as Chair of the US Technical Advisory Group to the International Standards Organization (ISO) Technical Committee 215 on Health Informatics.
Mr. Waegemann gave an historical overview of development of health care data standards as well as delineation of the major challenges currently faced by health care information professionals. Mr. Waegemann pointed out that there had been three distinct phases in development of health care data standards:
- There was a pre-1988 generation of standards developed in response to large-scale introduction of electronic record keeping systems.
- A second phase (1988-98) of standards development reacted to the widespread use of personal computers in maintaining records.
- A third phase, just now beginning, will have to develop standards that that can meet the requirements of a Web-based health care communication system.
Mr. Waegemann identified seven major trends in the latest phase of health care standards development:
- A need for and a move toward interoperability.
- A need for improving clinical specificity.
- A need for defining report cards.
- A need for ensuring privacy, confidentiality, and data security.
- A need for enhancing organizational productivity, i.e., decision support systems.
- Accreditation of health plans.
- Development of documentation standards.
In addition to the technical complexity posed by these challenges, Mr. Waegemann also discussed the organizational and jurisdictional complexity of the standards development process. Internationally, at least 30 countries are now developing standards. US standards activities are fragmented among a large number of organizations and work groups, the most important being those coordinated under the umbrella of the ANSI HISB committee. These organizations include:
- The American Dental Association.
- The American Society for Testing and Materials (ASTM) E31 Subcommittees on Healthcare Informatics.
- The Health Industry Business Communication Council.
- Health Level 7.
- The Institute of Electrical and Electronic Engineers.
- The National Council for Prescription Drug Programs.
- The Accredited Standards Committee on Insurance Interchange Standards (X12N).
Mr. Waegemann concluded by recommending that Federal agency representatives become much more active in ongoing standards development activities such as the ANSI HISB and associated Technical Advisory Group meetings.
Claudia Tessier made the next presentation, which focused on one function (medical transcription) that could benefit from development of data standards. Ms. Tessier is Executive Director of the American Association for Medical Transcription. She also serves as Chair of the ASTM Committee 31 on Healthcare Informatics.
According to Ms. Tessier, transcription services now cost Federal agencies at least $3 billion annually. However, there exists no quality standard for transcription, and transcription professionals can use a wide variety of formats. This lack of standardization almost certainly will be a major impediment to maintenance of electronic health care data systems.
Ms. Tessier proposed that Federal agencies support establishment of standards for medical transcription. Such standards would cover practice and style, formats, quality of transcription, and the types of acceptable data capture techniques such as speech recognition. Development and implementation of such standards would greatly improve the uniformity and ease of transmission of health care data. In all likelihood, such standards would also produce measurable improvements in patient care.
Ms. Tessier stressed that this was an area where Federal agencies could be the "driving" force in standards development. Adoption of a single set of transcription standards by Federal agencies would almost inevitably lead to adoption of the same or similar standards by the private sector. Substantial cost savings and improved patient care would likely result from implementation of the standards.
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Agency Data Activities
These opening talks were followed by a series of 5-10 minute presentations by representatives of contributing agencies sending spokespersons to the meeting. Agencies making presentations at the meeting included:
Agency for Health Care Policy and Research
Centers for Disease Control and Prevention and the Agency for Toxic Substance and Disease Registry
National Center for Health Statistics
Food and Drug Administration
Health Care Financing Administration
National Institutes of Health, National Library of Medicine
Department of Defense
Bureau of Labor Statistics
Department of State
National Highway Traffic Safety Administration
Department of Veterans Affairs
Consumer Product Safety Commission
Social Security Administration
Office of Personnel Management
Agency for Health Care Policy and Research
Dr. Fitzmaurice gave a brief overview of AHCPR's data collection activities, including the Medical Expenditure Panel Survey and the HIV Cost and Service Utilization Survey. He described AHCPR's support of ANSI's Health care Informatics Standard Board and of the U.S. Technical Advisory Group to ISO Technical Committee 215, Health Informatics, to improve coordination and cooperation on health data standards development nationally and internationally.
Dr. Fitzmaurice also discussed AHCPR's ongoing responsibility to develop data standards that meet requirements stipulated in HIPAA and his role as co-lead staff to the Computer-based Patient Record Work Group of the National Committee on Vital and Health Statistics. This working group has the responsibility to draft a congressionally mandated report on standards for patient record information and its electronic exchange.
Centers for Disease Control and Prevention (CDC) and Agency for Toxic Substance and Disease Registry
Dr. Ronald Fichtner explained CDC's strong interest in promoting data standards to enhance its surveillance and prevention programs. Among recent CDC initiatives is development of the National Immunization Program (NIP), which includes standard query, response, and update messages for immunization records. In addition, the National Center for Chronic Disease Prevention and Health Promotion is attempting to develop a similar mechanism for cancer registries. Related to this initiative, a meeting was held in August 1998 with CDC, the North American Association of Cancer Registries, and Health Level 7 representatives to explore the possibility of a standardized electronic exchange protocol.
Centers for Disease Control and Prevention, National Center for Health Statistics (NCHS)
Ms. Marjorie Greenberg summarized NCHS' role as the World Health Organization (WHO) Collaborating Center for Classification of Diseases for North America. In addition, Ms. Greenberg discussed the November 1998 HIPAA-related workshop sponsored by NCHS. The workshop was entitled "Implications of HIPAA's Administrative Simplification Provisions for Public Health and Health Services Research." This workshop resulted in a work group for representing health and health services research data needs in the standards development process.
Food and Drug Administration (FDA)
Dr. Charles Furfine's remarks concentrated on the FDA's interest and support for international standards. These efforts include the FDA-developed Coding Symbols for a Thesaurus of Adverse Reaction Terms (COSTART). In addition, the FDA is active on the International Conference on Harmonization of Technical Requirements for Registration of Pharmaceuticals for Human Use (ICH), and the Global Harmonization Task Force for Medical Devices.
Health Care Financing Administration (HCFA)
Bob Mayes provided an overview of HCFA's need to obtain consistent data on such key issues as measures of beneficiary satisfaction, cost, and types of interventions. In addition, Mr. Mayes stressed the need for Federal agencies to become more actively involved in the standards development process, both in the United States and internationally.
National Institutes of Health, National Library of Medicine (NLM)
Betsy Humphreys presented a synopsis of the most recent NLM efforts in standards development. Current activities in this area include having Ms. Humphreys serve as co-chair of the Codes and Classifications Implementation Team for HIPAA Administrative Simplification.
Department of Defense (DOD)
Marco Johnson gave an overview of the current DOD Data Standards Strategic Plan. This initiative will employ a "top-down" mission/goals approach to be based on pre-existing customer-driven systems. A key aspect of the effort will be a community-wide Data Quality Action Team that will address all aspects of the data quality issue.
Bureau of Labor Statistics (BLS)
Guy Toscano provided an overview of the two health care data sets maintained by BLS: the Survey of Occupational Injuries and Illnesses and the Census of Fatal Occupational Injuries. In addition, Mr. Toscano stressed BLS' ongoing need for standardized data that specify the source and context of injuries and illnesses.
Department of State
Jennifer Grise explained the need of the Department of State to maintain medical records on Foreign Service employees and dependents serving in over 250 locations worldwide. Ms. Grise also described development of two database management systems in the department:
- The Worldwide Health Resources Risks and Recommendations System.
- The Electronic Medical Record System.
National Highway Traffic Safety Administration (NHTSA)
Garry Criddle pointed out that although NHTSA does not have any regulatory authority, it does promote standards through its development of 12 National Standard Curricula for emergency medical services and emergency medical technicians. In addition, Mr. Criddle stressed NHTSA's need for standardized medical data to assess accurately the impact of safety programs and devices.
Department of Veterans Affairs (VA)
In his presentation, Greg Seppala stressed the VA's proactive role in promoting standards development throughout the Veterans Health Administration (VHA) medical system. In addition, Mr. Seppela mentioned that VHA is providing funds to support a Health Level 7 Government Projects Special Interest Group to expedite processing of proposals that benefit the Government Computer-based Patient Record (GCPR) initiative.
Consumer Product Safety Commission (CPSC)
Robin Lingle gave brief overviews of the health care related data sets maintained by the CPSC. These include:
- The National Injury Surveillance System.
- The CPSC Death Certificate Project.
- The Injury and Potential Injury Incident data set.
In addition, Ms. Lingle stressed the need of CPSC for medical data that reported the proximate cause and context of accidents and injuries.
Social Security Administration (SSA)
Derek Wang and Debbie Somers of the SSA provided overviews of the agency's collaborative efforts, including its ongoing partnership with the VA. This project is an effort to establish a policy and framework that will allow State disability examiners online access to the automated patient records maintained by VA medical examiners. In addition, the presenters stressed the agency's ongoing interest in ensuring full implementation of health care data standards.
Office of Personnel Management (OPM)
Leroy Strickland pointed out that OPM has a major interest in health care data standards because OPM administers the Federal Employees Health Benefits Program. This program covers approximately 9 million Federal employees, retirees, and family members. In addition, OPM is routinely asked to supply Government-wide data on the incidence of specific health problems and interventions.
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Challenges in the Near Future
After the agency presentations, the group identified near-term challenges. These challenges are all data standards issues or concerns that will have to be addressed by Federal managers. The challenges are listed below in the order mentioned by participants in the group discussion. The order of the challenges does not imply prioritization by participants.
Challenges identified by participants included:
Cost of agency participation in standards activities: The business case for a more active Federal role. This issue reflected a concern that agencies were not devoting enough staff time and budget support (e.g., travel expenses to major meetings) to this issue. Some participants believed that Federal managers should make a strong case that their agencies need to be represented in ongoing standards developments activities.
Determining how agencies will chart their own course for establishing standards. A number of participants pointed out that there were no clear procedures within departments or agencies as to how standards would be developed. This procedural issue needs to be addressed by Federal managers.
Determining how agencies can meet the needs of providers. Some participants saw a Federal role in supporting the development of standards that meet the requirements of health care providers, both for public and private-sector programs.
Projecting and preparing for HIPAA impacts. Participants agreed that most Federal agencies would not have a proactive role in developing the public-sector response to HIPAA's requirements. However, they agreed that each agency would have to anticipate HIPAA's impact on public and private-sector organizations with which they interact and on their own health programs.
Enhancing agency-to-agency coordination. Participants agreed that the number of inter-agency initiatives (e.g., SSA and VA) needed to be expanded and that there was a need for enhanced interagency communication.
Increasing the priority given to standards activities at the agency level. The participants agreed that that senior agency managers need to be alerted to the probable impact of standards development and implementation.
Determining if there should be separate or combined Federal standards. There was agreement that there needed to be some sort of determination if a "one size fits all" could be developed for Federal agencies or if there needed to be standards developed for specific agency missions and functions.
Addressing the lack of focus of standards activities across enterprises. The participants agreed that there needed to be inter-agency initiatives that identified standards requirements and implementation issues across enterprise boundaries, e.g., Social Security and Medicare.
Development of a comprehensive list of current Federal initiatives related to standards development. There was general agreement that there needed to be a communication resource that would allow Federal managers to identify all standards-related initiatives and work groups.
Determining if existing groups (e.g., ANSI-HISB) can facilitate the Federal standards development process. Participants expressed concern regarding the ability of existing standards-development bodies to successfully address the concerns of Federal agencies.
Development of strategies for implementation, particularly with respect to HIPAA. Participants saw a need for a Federal initiative(s) that will address obstacles to implementation of standards and can monitor compliance.
Ensuring application of appropriate technology for standards implementation. Participants agreed that successful implementation of standards would be heavily dependent on the compatibility of the standards with emerging database and electronic communication technologies.
Relating Federal activities to international standards development process. The participants agreed that Federal agencies must remain cognizant of the international activities as well as increasing the Federal presence in the international health data standards development process.
Establishing how content should be developed for standards. There was agreement that Federal agencies should establish agreed upon formal procedures for developing the content of specific standards.
Finding ways to leverage resources outside the health care industry. Participants agreed that Federal agencies should develop creative strategies for locating technologies that facilitate implementation of standards.
Determining how individuals and agencies will have access to standards. There was general agreement that Federal agencies should develop easily accessible reference sources that provide explanations and definitions of health data standards. A health data set registry that contains answers to a common set of questions asked of health data sets would be a significant step forward.
Determining appropriate Government role in maintenance of standards. The participants agreed that the Federal Government should establish procedures for the periodic review and updating of health data standards used in its programs and in the private sector.
Addressing confidentiality concerns. The participants agreed that all data standards systems must include adequate mechanisms to ensure the confidentiality of patient data.
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For more information about this AHCPR initiative, contact J. Michael Fitzmaurice, Ph.D. Dr. Fitzmaurice can be reached at (301) 427-1227 or MFitzmau@ahrq.gov.
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Current as of December 1999
Federal Health Care Informatics Standards Activities. Agency for Health Care Policy and Research, Rockville, MD. http://www.ahrq.gov/data/datameet.htm