Report 6 of the Council on Scientific Affairs (I-00)
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Accuracy, Importance, and Application of Data from the U.S. Vital Statistics System

Full Text

The National Vital Statistics System (including live births, deaths, and fetal deaths) is one of the oldest sources of health-related information in the United States. Birth and death registers were first begun in the colonial period.¹ This evolved into a decentralized system in which responsibility for the registration of vital events was vested in the individual states and certain registration areas.² Comparatively late in U.S. history, the federal government assumed responsibility for developing the uniform standards necessary for the collection of national statistics.^3-4 The first standard certificates for the registration of live births and deaths were developed in 1900 by the U.S. Bureau of the Census. A model state law was first promulgated in 1907. However, it was not until the 1930s that all states complied with the model law and used the standard certificates, at which point the United States could claim to have a national vital statistics system.⁴

Methods

This report examines the medical uses and accuracy of data from the U.S. vital statistics system and the role of physicians in the completion of vital records. A systematic review of the literature was conducted using the MEDLINE database for the years 1980 to 2000. Other sources included the National Center for Health Statistics (NCHS) and the Illinois Bibliographic Information Services (IBIS), a collection of databases that includes the Social Sciences Index. English-language articles were selected based on their ability to (1) provide examples of the application of vital statistics in medical research; (2) inform as to the accuracy of data on vital events; and (3) illustrate the role of the physician in the completion of state certificates of birth, death and fetal death. Further relevant articles and books were selected from the reference listings of the primary journal articles.

U.S. Standard Certificates: Birth, Death, and Fetal Death

U.S. Standard Certificates remain the principal means by which uniformity of data collection is achieved.³ These certificates are used as models by the states in designing their own certificates of birth and death, and reports of fetal death. They are reviewed and updated approximately every 10 to 15 years and over time they have been expanded to provide legal and personal information as well as statistical information needed by state and local government agencies, particularly health departments.^4-7 For instance, the birth certificate is now an important source of information on maternal and infant health, including medical and behavioral risk factors for the pregnancy, birth weight, period of gestation, complications of labor and/or delivery, abnormal conditions of the newborn, and congenital anomalies of the child. The death certificate is also an important source of disease-related data, providing information on the immediate cause of death (i.e., the disease or injury that directly causes death) as well as the underlying cause of death (i.e., disease or injury that initiated the train of morbid events leading to death). In addition to cause of fetal death, the fetal death record includes information on prenatal care, medical and behavioral risk factors associated with the pregnancy, birth weight, period of gestation, complications of labor and delivery, and congenital anomalies of the fetus.

Because of its uniformity and comprehensiveness, the national vital statistics system is the primary source of health-related information comparable at the local, state, and national levels.^4,8 This comparability has made it an invaluable resource for monitoring injury and disease, profoundly influencing our understanding of death and illness.^4,7,9 Vital statistics, derived from information reported on state vital records, have been used to examine risk factors associated with compromised neonatal and infant outcomes,^10-17 to define the associated diseases and economic burdens of tobacco^17-20 and alcohol^20-22 use, to calculate the health implications and health care costs of obesity,^20,23 to understand injury- or disaster-related mortality risk,²⁴ to calculate potential years of life lost to injury or disease,²⁵ and to understand the etiology of a number of common diseases, including coronary heart disease and stroke,^26-30 cancer,^31-33 diabetes,³⁴ HIV,^25,35 hypertension,³⁶ and obstructive lung disease.^37-40

Data from the birth, death, and fetal death records are also used in goal setting, the formulation of health policy, and program planning and evaluation.^41-42 Many of the objectives of the Department of Health and Human Services’ Healthy People 2000 were derived from data from the vital statistics system.⁴³ Information on mortality has informed the development of tobacco-related legislative initiatives⁴⁴ and influenza-related mortality data have been used to develop vaccination recommendations.⁴⁵ Vital statistics data have been instrumental in the development and evaluation of the national Healthy Start Program to improve maternal and infant health^46-47 and to evaluate primary care case management under Medicaid.⁴⁸ Data on state vital records have also played an important role in determining resource allocation. Literally millions of dollars in health-related resources are allocated each year on the basis of information provided on cause of death alone.⁴⁹

The Role of the Physician in Completing Vital Records

Physicians play key roles in completing vital records of birth, fetal death, and death. On the death certificate, physicians are responsible for accurately certifying to the cause of death, as they are best able to decide which of several conditions was responsible for death and to describe the complete pathophysiologic sequence ending in death. This includes the immediate (or proximate) cause of death as well as the underlying (or initiating) cause, defined by the International Classification of Diseases (ICD) as the disease or injury that started the train of morbid events that led directly to death, or the circumstances of the accident or violence that produced the fatal injury.⁵⁰ Certifying physicians also provide information on conditions that contributed to death but were not the underlying cause (contributing causes).⁵¹ If a physician attended a delivery that resulted in fetal death, he or she is required to complete the cause-of-death section on the fetal death certificate. Additional information on the fetal death record, such as medical risk factors in the pregnancy or congenital anomalies of the fetus, is usually taken from the medical record and added to the certificate by a medical records clerk. Similarly, while physicians do not always fill out the birth certificate, data on the birth record are transcribed directly from the hospital medical record. Thus the accuracy of much of the medical information on the birth certificate and fetal death record are dependent on the accuracy and completeness of the clinical record.

To the extent that they are responsible for the data, physician obligations to public health serve as a mandate that information on state vital records be complete and accurate. In regard to the medical certification of death, obligations to ensure the accuracy of this data do not end with report of a single cause of death, but extend to the report of the entire pathophysiologic sequence that resulted in death. Underlying causes are actually more useful for public health purposes, as an understanding of this sequence allows for public health interventions designed to cut the chain of events and prevent more deaths.⁴⁹ In the same way, attention must be given on the medical record to medical risk factor data associated with birth. These items were specifically added to the birth certificate in the last revision to assist in public health research and programs to improve maternal and infant health.⁷ Complete information on gestation, birth weight, and risk factors also allows for a more comprehensive assessment of fetal death and the subsequent development of programs to lower infant, fetal and perinatal mortality. On the fetal death record, it is also important to distinguish between intrapartum fetal deaths (those that occur during labor) and antepartum fetal deaths (those that occur before labor) and between early and late fetal death.^{4,43, 52} These distinctions also inform the advancement of targeted programs to lower infant and perinatal mortality.

Accuracy of Data from Vital Records

Despite the importance of vital statistics data, numerous authors have raised questions regarding the accuracy of data on vital records^53-64 While birth certificates are often the best source of information on general demographic data, routine medical procedures, and birth weight,^53-55 they are less complete in their report of uncommon conditions, including medical risk factors, complications of labor and delivery, abnormal conditions of the newborn, and congenital anomalies.^53-54,56-57 These findings hold even in cases where the uncommon conditions in question are relatively serious.⁵³ Analyses of the medical certification of death have generally found greater accuracy in the report of some causes of death (e.g., cancer) compared to others (e.g., deaths resulting from diseases of the respiratory or digestive systems).^8,59 Specifications of the cause of death are also less accurate for certain racial and ethnic minorities.^65-66 Finally, incomplete diagnostic evaluation, and a high proportion of events with unknown or not stated causes has led to inaccuracies in the coding of the underlying cause of death on the fetal death record.⁶⁴

The role played by the physician in the recording of vital events has far-reaching implications for the reliability and accuracy of data on U.S. vital records. The accuracy and completeness of these records generally reflect how well the physician knows the medical history of the patient in question, his or her ability to make a proper diagnosis, and his or her understanding of the information requested.^9,51 Many of the errors in the report of vital events are related to the latter factor. The medical certification of death is illustrative of this problem, as errors do not usually represent intentional misrepresentations on the part of physicians, but reflect a lack of formal instruction in the completion of vital records. Lack of training often leads to a misunderstanding of the distinctions between underlying cause of death, immediate cause of death, manner of death, and conditions contributing to death.⁵¹

These problems are aggravated by the fact that the most knowledgeable person is not always the one who completes the certificate. For instance, the person certifying to the cause of death is frequently not the patient’s primary attending physician.⁹ Instead, depending on the situation, certification of the cause of death may be completed by other physicians on call, house staff, and in some locations medical examiners and coroners. Lacking medical histories and clinical data usually required to accurately infer etiology under these circumstances, the certifier may resort to more generalized terminology that can distort the cause of death.⁶⁷ On the fetal death record, physicians are not even required to complete areas of the certificate that call for their particular training and expertise, such as the diagnosis of congenital anomalies. The cause-of-death section is required of a physician only if he or she was attending the delivery. A midwife or a nurse cannot be expected to make these diagnoses with the same degree of certainty. Similarly, medical clerks completing the birth certificate may have trouble determining whether a condition mentioned in the patient’s hospital record should be listed as a risk factor by medical definition.⁵⁶ Recent increases in multi-symptom diseases have only made it more difficult for those not trained to accurately diagnose the medical causes and conditions associated with vital events.^63-64

Other factors also influence accuracy of U.S. vital records. Physicians have been reluctant to make certain diagnoses, such as alcohol-related mortality.⁶² Other stigmatized conditions, including HIV status or AIDS, suicide, and child abuse, may also be understated because of possible legal, financial, and social implications for the patient or the family of the deceased.⁶⁸ Parallel problems on the birth and fetal death records include the report of fetal alcohol syndrome and maternal cigarette use. The problem of underreporting reflects the inherent tensions in completing certificates, as they serve both as a personal and legal document and as a public health record. Physicians may be aware of these tensions and be tempted to put requests of the patient or family above the needs of research and public health. In particular, some physicians may feel compelled not to mention certain conditions on the standard certificates because state laws governing the confidentiality of such information vary considerably.⁶⁸ In the least restrictive states, information from vital records is readily available to anyone simply by perusing the files of the state vital statistics office.

Improving Data on Vital Records

For the broad purposes of identifying major health problems, direction setting, and program design and evaluation, vital statistics are probably the best available source of information.^8,58-59 Consequently, efforts should be pursued to improve the accuracy and completeness of data on vital records, including education of medical students and house staff in postgraduate medical training programs, incorporation of questions on the reporting of vital events into medical and specialty board examinations, and training and feedback to practicing physicians.^9,51 Resources are available through the NCHS, which distributes instructional materials to hospitals through state health departments and directly to physicians through the NCHS Web site (http://www.cdc.gov/nchs/about/major/dvs/handbk.htm). Recent efforts have also been made to improve the U.S. Standard Certificates. The latest revisions are being completed in 2000 by a panel convened by the NCHS and are to be recommended to the states for implementation beginning in 2003. ³ With significant input from the American Medical Association (AMA), the certificates have been reorganized to simplify the process for practicing physicians. The revised standards also seek to improve the report of data for public health purposes, including a question in the medical certification of death on tobacco-related mortality and items on the birth certificate on maternal morbidity.

While training and information dissemination will continue to play important roles in improving the quality of data, arguably the greatest promise for U.S. vital statistics lies in the information revolution.⁶⁹ Shifting from a paper-based to an electronic process for recording vital events and transmitting the information to public agencies provides opportunities to reduce reporting delays, improve data quality, and increase the utility of information on vital records. The quality of data is expected to improve as electronic systems can eliminate redundant data entry and build in edits to prevent individuals who are completing the record from skipping fields or making data entries outside the range of plausibility. Prompts, edits, and tutorials to guide the user can also be incorporated to improve understanding of the information requested, reporting procedures, and data quality.

This promise has been partly realized due to considerable advances in the development of an electronic birth certificate (EBC). In 1995, more than 90% of all births in the United States were recorded on an EBC and transmitted to vital statistics agencies electronically.⁷⁰ The EBC streamlined the process of medical certification of birth, with improvements in the timeliness of data flowing from hospitals to states.^69,71 A preliminary study also reported marked improvements in data quality as demonstrated by reductions in query rates (percentage of records with missing or incomplete data).⁶⁹ There remains, however, considerable room for improvement and a need for detailed specifications to ensure that the right electronic systems using appropriate and consistent steps and edits are developed. Despite the successes of the EBC, development of an electronic death certificate (EDC) or an electronic report of fetal death have not kept pace. New Jersey was the first state to go "live" with its EDC system, having started in two hospitals in 2000.⁷² An oversight group was established much earlier to ensure that EDCs conform to certain standards and over the next few of years, other states are expected to implement their own nationally approved EDCs.

American Medical Association Policy

[Editor's Note:  See Recommendations for updated AMA policy.] The AMA has limited policy related to the issues raised in this report: H-85.996 (AMA Policy Database), Improvement in Accuracy of Death Certificates; H-350.975, Improving Healthcare of Hispanic Populations in the United States; and H-85.975, Adding Tobacco Contribution to Death Certificates. However, consistent policy regarding the completion of all three U.S. certificates does not exist. More action is clearly needed if physicians are to take the lead in improving this valuable resource.

RECOMMENDATIONS

The following statements, recommended by the Council on Scientific Affairs, were adopted by the AMA House of Delegates as AMA policy and directives at the 2000 AMA Interim Meeting:

1. The AMA (a) acknowledges that the reporting of vital events is an integral part of patient care; (b) urges physicians to ensure completion of all state vital records carefully and thoroughly with special attention to the use of standard nomenclature; and (c) supports notifying state medical societies and state departments of vital statistics of this policy and encouraging their assistance and cooperation in implementing it. (Policy)
2. The AMA, in cooperation with state and local medical societies, encourages states to adopt the changes recommended in the latest revision of the U.S. Standard Certificates of Live Birth, Death, and Report of Fetal Death, planned for implementation in January 2003. (Directive)
3. The AMA will assist the National Center for Health Statistics (NCHS) and others in making physicians aware of impending changes to the U.S. Standard Certificates, such as the addition of the question on tobacco-related mortality to the medical certification of death. (Directive)
4. The AMA supports the integration into undergraduate, graduate, and continuing medical education of instruction on the use and proper completion of vital records of birth, fetal death, and death. The presence and effectiveness of this education could be monitored through the Liaison Committee on Medical Education (LCME) annual questionnaire to medical schools, the joint AMA/Association of American Medical Colleges survey of residency programs, questions on the United States Medical Licensing Examinations, and questions on certifying examinations in the individual specialties. (Policy)
5. The AMA encourages physicians to provide complete and accurate information on prenatal care and hospital patient records of the mother and infant, as this information is the basis for the heath and medical information on birth certificates. (Policy)
6. The AMA urges state and specialty medical societies to pursue local policies and/or legislative changes that would enhance the accuracy of vital records in the United States. (Directive)
7. The AMA will work with the NCHS, the American College of Obstetrics and Gynecology (ACOG), the American Academy of Family Physicians (AAFP), and the American Academy of Pediatrics (AAP) to develop guidelines for physician responsibility in the medical certification of live birth and fetal death. (Directive)
8. The AMA, in association with state and local medical societies, recommends that state departments of vital statistics adopt uniform policies that ensure the confidentiality of health and medical information on certificates of live birth, fetal death, and death, with consideration given to anticipated guidelines for the electronic transfer of data. (Directive)
9. The AMA recommends that states work quickly to adopt electronic registration of vital events to enable detailed instructions, help screens, and real-time edit checking as a means to improve the accuracy and timeliness of data on U.S. vital records. (Directive)
10. The AMA will notify state and local medical societies, state departments of vital statistics, and the NCHS of its policies concerning revised vital records. (Directive)

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