Following the return of American military men and women deployed to Southwest Asia during Operations Desert Shield/Desert Storm, illnesses were reported that may have been related to service in the Gulf War. Military medical records from this deployment have not been able to provide substantial support in the search for causes of, and contributing factors to, these illnesses among Gulf War veterans.
This paper examines military medical recordkeeping policies and practices during and after the Gulf War, as well as initiatives for the future. It addresses medical recordkeeping issues within three broad categories: content of the record, consolidation of the record, and custody of the record. The paper focuses on medical recordkeeping policy, practice, and plans; it does not directly address locating any records now thought to be missing.
Military medical recordkeeping policies at the time of the Gulf War tended to be service-specific and published by the respective military Surgeons General. Prior to Operations Desert Shield/Desert Storm, these policies focused almost exclusively on the care of garrisoned forces and dealt less with recordkeeping under deployment conditions. Full individual health records were generally to accompany deployed personnel.
During the Gulf War, the Army and the Air Force deployed an abstracted record instead of the individual health record. The Department of Defense issued supplemental guidance on the documentation of immunizations that were investigational or required some measure of operational security. Documentation of deployment medical information in individual health records was problematic.
Post-Gulf War medical recordkeeping policy continues to be made by each military service for routine activities in their medical treatment facilities. The establishment of an abstracted record for deployments is now standard policy for Army and Air Force personnel. Navy and Marine Corps personnel continue to deploy with full individual health records. The Department of Defense (Health Affairs) and the Joint Staff are focusing on force health protection and the documentation of medical surveillance activities in support of continuing operational deployments in Bosnia and Southwest Asia. Cooperation has increased among the Department of Defense, the Department of Veterans Affairs, and the National Archives and Records Administration on issues involving the transfer and storage of medical records.
Additionally, the groundwork is being laid for the development and future implementation of a personal information carrier and a computer-based patient record. These are viewed by the Department of Defense as technological solutions to both the medical recordkeeping deficiencies associated with the Gulf War and the presidential mandate to create a new force health protection program with a comprehensive, life-long medical record for each military servicemember.
A. Origin of the Issue
Nearly 700,000 American military men and women deployed to Southwest Asia at the time of the Gulf War. Since their return, some veterans have experienced persistent and unexplained illnesses possibly related to their service in the Gulf. Other veterans have been concerned that the development of more defined conditions, such as cancers and birth defects, may be associated with Gulf War service. Organizations such as the Institute of Medicine, the Presidential Advisory Committee on Gulf War Veterans Illnesses, and the General Accounting Office have commented that the lack of medical information from the Gulf has hampered investigation of these illnesses and diseases. Additionally, some veterans have reported that medical care and immunizations given during deployment were not recorded in their medical records, and still others have expressed concerns that medical information is now missing from their records. These concerns and comments have focused attention on medical recordkeeping during the Gulf War.
B. Purpose of the Paper
To better understand what happened with medical recordkeeping and to provide some additional insight on what can be done to improve it, the Office of the Special Assistant to the Deputy Secretary of Defense for Gulf War Illnesses has prepared this information paper. The paper discusses the major recordkeeping policies in place at the time of the war, the changes and additions to these policies since that time, and the designs for the future. It compares and contrasts these policies with actual recordkeeping practices described by veterans, the military, and reviewing organizations. It ends with some general observations on military medical recordkeeping. Because deployments place special requirements on medical recordkeeping, the review focuses on medical recordkeeping under deployment conditions.
For veterans, this paper should provide some context in which medical recordkeeping problems occurred and some reasonable explanations for them. The information may be useful both for veterans with concerns about their records and for agencies working to improve medical recordkeeping. In preparing the paper, a small number of individual medical records were examined, but the purpose was not to conduct a systematic review of specific health records, or to locate medical records now thought to be missing. Nevertheless, personnel from the Office of the Special Assistant have been engaged in a project to locate and catalog Gulf War hospitalization records; when appropriate, information from that project is included. Statements of Gulf War veterans are provided in green italics throughout the narrative. These statements reflect the specific experiences and impressions of individuals, and therefore should not be generalized.
C. Organization of the Narrative
The narrative section of this paper is organized by time periods: Pre-Gulf War includes policies in place before the Gulf War; Gulf War includes policies and practices during the Gulf War (including the pre- and post-deployment phases); Post-Gulf War includes the policies and practices during subsequent and ongoing deployments; and Future includes policies under development but not yet implemented. Each time period begins with an overview of the major topic and subsequent key points.
Recordkeeping issues are clustered into three broad categories: content, consolidation, and custody. Each of these categories contains issues that presented some recordkeeping difficulties in the Gulf War; some continue to present recordkeeping challenges. These categories are expanded below and carried as headings throughout the narrative.
Content of the record: This category addresses the contents of the individual health record, the arrangement of medical information in the record, and the similarities and differences among records maintained by the different military services and components. In addition to routine information on clinical and preventive care, the health record contains information necessary to determine the medical "deployability" of the servicemember. If full individual health records do not accompany personnel on deployment (as was the case for some servicemembers during the Gulf War), the abbreviated or abstracted record should contain enough information to support health care during deployment. On occasion, the individual health record should also include documentation of investigational drug and vaccine use and perhaps documentation of widely-distributed drugs. (Generally speaking, the term "investigational" applies to drugs and vaccines that are undergoing testing and have not been approved by the Food and Drug Administration, or have not been approved for a specific use.) Problems in the content and arrangement of the record may affect the screening of servicemembers during mobilization, the provision of health care during deployment, and the investigation of post-conflict illnesses.
Consolidation of the record: This category addresses the handling of medical records written in the field, the inclusion of hospitalization summaries, the annotation of immunization information from rosters and logs, and the disposition of stray records and forms. These records of care given during deployment should be joined with the servicemembers permanent health record. Problems in consolidation of the record can result in loss of medical information generated under deployment conditions and may make the continued care of veterans and the investigation of post-conflict illnesses more difficult.
Custody of the record: This category addresses issues of record ownership, access, sharing, transfer, and storage. Both individual health records and hospitalization records should be safely transferred and archived, yet remain easily accessible to veterans and others with legitimate need to see the medical information in them. Problems in the custody of the record can lead to the loss of the medical records or can delay access to the information they contain; this can also complicate the continued care of veterans and the investigation of post-conflict illnesses. Along with the Department of Defense (DoD), the Department of Veterans Affairs (VA) and the National Archives and Records Administration (NARA) play substantial roles in the custody of military medical records.
D. Types of Medical Records
Individual health (outpatient) records: The terms "health record" and "medical record" have been used to describe nearly any document containing medical information about people or populations, from clinic visits to public health reports. Yet most servicemembers will think of medical or health records interchangeably as their own individual health records, maintained by the services. In this paper these records will be called "individual health records." This will serve to distinguish them from other medical records, such as logs and rosters, which deal with medical information about groups of servicemembers, and from other records which contain medical information, such as disease surveillance and statistical reports.
For each servicemember, the individual health record might include documentation of examinations and treatments, immunizations, eyewear prescriptions, laboratory testing, medications, allergy alerts, and medical profiles (documents that identify health conditions or duty limitations)and often hospitalization summaries and health summaries. Since this individual health record contains information largely generated in an outpatient setting (not during a hospital stay), it is sometimes known as the "outpatient record." Figure 1 illustrates selected elements of this record that are especially important for deployment-related recordkeeping.
Figure 1. Selected contents of the individual health record
Hospitalization (inpatient) and other medical records: Not all medical information about a servicemember is included in the individual health record. Full documentation of a hospital stay, for example, is kept in a separate "inpatient record." On occasion medical records with sensitive content (e.g., mental health records) may be kept in a separate file. A pocket immunization record, commonly called the "yellow shot record," is carried by most but not all servicemembers. Physical fitness testing results, which are also health information in the broader sense, are carried in a separate training record. Dental information is generally carried in a separate dental record. (Dental records are not specifically addressed in this paper, since there appear to have been few problems unique to these records and few concerns of Gulf War veterans.) Lastly, medical information about individual servicemembers is carried in logs and rosters, which contain information about groups of individuals. Some records, like immunization logs and rosters, are efficient for wide-scale immunization programs, but the information should be copied into the individual health records. The variety of records that may contain medical information about an individual servicemember is illustrated in Figure 2.
Figure 2. Selected records containing medical information
Paper and electronic records: While paper records still comprise the bulk of medical records, the military has been working to design and implement electronic (i.e., computer-based) medical recordkeeping. There is good reason to believe that all or nearly all of medical recordkeeping will someday be computerized. Properly designed and implemented, electronic recordkeeping offers more than simple automation of the paper records; it allows for better integration of the medical information in these records and for easier viewing of this information than is possible with paper record systems. These initiatives, and some potential successes and problems with them, are discussed under the Post-Gulf War and Future periods in the narrative that follows.
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