–A–
The U.S. Vital Statistics System: The Role of State and Local Health Departments

Steven Schwartz*

INTRODUCTION

This paper describes the role of state and local health departments in the registration, processing, and analysis of vital events in the United States. It details the major responsibilities of offices of vital statistics and vital records and how vital events that are reported locally become state and national data. Many of the functions are basic to any data collection system, such as ensuring complete, accurate, and timely reporting. It is especially challenging in an environment that involves creating legal documents that prove U.S. citizenship, conducting public health surveillance, and protecting national security. This paper also explains the paper-based and automated systems currently in use and how they are evolving into web-based paperless systems that present opportunities for improved data quality and electronic verification and exchange of vital-event information.

*

Steven Schwartz, Ph.D., registrar, Bureau of Vital Statistics, New York City Department of Health and Mental Hygiene, and past president, National Association for Public Health Statistics and Information Systems (NAPHSIS)



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–A– The U.S. Vital Statistics System: The Role of State and Local Health Departments Steven Schwartz∗ INTRODUCTION This paper describes the role of state and local health departments in the registration, processing, and analysis of vital events in the United States. It details the major responsibilities of offices of vital statistics and vital records and how vital events that are reported locally become state and national data. Many of the functions are basic to any data collection system, such as ensuring complete, accurate, and timely reporting. It is especially chal- lenging in an environment that involves creating legal documents that prove U.S. citizenship, conducting public health surveillance, and protecting na- tional security. This paper also explains the paper-based and automated systems currently in use and how they are evolving into web-based paperless systems that present opportunities for improved data quality and electronic verification and exchange of vital-event information. ∗ Steven Schwartz, Ph.D., registrar, Bureau of Vital Statistics, New York City Department of Health and Mental Hygiene, and past president, National Association for Public Health Statistics and Information Systems (NAPHSIS) 77

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78 VITAL STATISTICS BACKGROUND In the United States, all vital events are local. What we see as national vi- tal statistics start out as births, deaths, terminations of pregnancy, marriages, and divorces that are registered locally. There are 57 vital registration juris- dictions in the United States: The 50 states, 5 territories (Puerto Rico, U.S. Virgin Islands, Guam, American Samoa, and the Northern Mariana Islands), the District of Columbia, and New York City. Each of the 57 jurisdictions has a direct statistical reporting relationship with the National Center for Health Statistics (NCHS). Some of the states have centralized vital records offices, but most have local registrars who receive, register, and issue certified copies of vital records. There are over 6,000 local vital registrars nationwide. Each of the jurisdictions is also a member of NAPHSIS, the National Association for Public Health Statistics and Information Systems. The asso- ciation was formed in 1933 to provide a forum for the study, discussion, and solution of problems related to these programs in the respective members’ health departments. NAPHSIS provides national leadership and advocacy on behalf of its members to ensure the quality, security, confidentiality, and utility of vital records and health statistics, as well as their integral role in health information systems, for monitoring and improving public health. NAPHSIS represents the interests of jurisdictions on cross-cutting vital records and health statistics matters. These interests include national stan- dards for data collection, exchange, issuance, and verification and electronic systems to collect, maintain, and disseminate records and data in a way that is timely, accurate, and protects confidentiality and security. NAPHSIS cre- ates and fosters communication, best practices, training opportunities, and sharing of information across all jurisdictions. NAPHSIS works to build confidence in the integrity of public health and vital records systems and the data produced. NAPHSIS also educates and negotiates on behalf of the jurisdictions with NCHS, the Social Security Administration (SSA) and other federal and na- tional partners to ensure fair and equitable support and compensation for all jurisdictions, regardless of size or geographic location. MAJOR RESPONSIBILITIES OF VITAL STATISTICS OFFICES Some jurisdictions began recording births, deaths, and marriages as early as 1632 (Hetzel, 1997). Later, this civil registration function expanded to include collection of public health statistics, beginning with death data. Ju- risdiction vital records and statistics offices have long had responsibility for these two essential governmental functions: the civil registration of vital events and the collection of public health data. It is now recognized that vital records offices have a third, equally important function: helping to en-

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APPENDIX A 79 sure national security. The 9/11 Commission Report recognized that birth certificate issuance can create risks and that it is necessary to devise standards for when a birth certificate can be issued (National Commission on Terrorist Attacks Upon the United States, 2004). Civil Registration Jurisdiction and local vital records offices are enormous customer service operations. Over 11 million vital events are reported annually in the United States, including 4.3 million births, 2.4 million deaths, 26,000 fetal deaths (over 20 weeks gestation), 2.1 million marriages, and 1.1 million divorces (Sutton, 2008; MacDorman et al., 2007).1 In addition, 1.2 million induced terminations of pregnancy are reported (Guttmacher Institute, 2008). De- pending on jurisdiction laws, most of these events are reported directly to state and local vital statistics offices in the form of certificates of birth, death, marriage, and divorce and reports of spontaneous and induced termination of pregnancy. State and local vital records offices, as the custodians of the records, must register and process these original, generally confidential records. Ju- risdiction systems vary widely and by certificate type, which ranges from certificates that may be printed on 100 percent cotton paper with wet sig- natures for archiving to state-of-the art paperless records received through a secure Internet transmission with a biometric authentication. Regardless of the method, each record is unique, must be logged in, evaluated for data quality, and assigned file numbers. The data on the records serve two purposes. For the legal registration of the record, it is essential to have accurate data to prepare certified copies and to create an index for retrieving the records. Vital records offices have the responsibility to maintain and produce certified records that are a true copy of the original. Data entry or retrieval errors would prevent vital records offices from discharging this core responsibility. For public health reporting and analysis, accurate demographic and medical data are equally important. Because vital event certificates are legal documents, it is not trivial to make changes to them after they have been registered and filed. If families want to correct or amend a record, they must follow detailed procedures prescribed by the jurisdiction. Typical examples of corrections are spelling, date, and typographical errors. Documentation is generally required to prove what information is correct. Examples of birth record amendments include adoptions, adding a father’s name, legal name changes, and changes of sex for transgender applicants. These amendments to birth records gener- divorce figure is calculated using the rate of 3.6/1, 000 population of 301.5 million, 1 The and excludes data for California, Georgia, Hawaii, Indiana, Louisiana, and Minnesota from the numerator and denominator.

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80 VITAL STATISTICS ally require court orders or other legal instruments, such as an acknowledg- ment of paternity. All of these corrections and amendments must be treated carefully, to ensure that the documentation is proper and to prevent fraud. A core function of vital records offices is issuing certified copies of birth and death certificates. This intrinsically local or state governmental function is both a drain on vital statistics offices’ human resources and a source of revenue for jurisdictions. The revenue is substantial. Birth certificate fees among states in 2007 ranged from $9.00 (Florida) to $30.00 (New York), with an average price of about $15.00 per certified copy. Collectively, ju- risdictions issue millions of certified copies of birth and death certificates annually. Unfortunately, the revenue often goes to a state’s general revenue fund and not back to the program. Thus, personnel are often diverted from other work to meet important—and highly visible—customer service needs. As a result, less visible functions, such as quality assurance, training, and hospital site visits, may receive less attention or fewer resources. Public Health Data Reporting and Analysis Every jurisdiction is responsible for the receipt, processing, quality, and analysis of its data. Vital-event data are derived from the certificates filed with each jurisdiction and become the vital statistics of that jurisdiction. They also become part of the nation’s vital statistics through a cooperative agreement with NCHS, the Vital Statistics Cooperative Program (VSCP). It is cooperative because the collection of vital statistics is a function of the jurisdictions and not the federal government. Each jurisdiction has a con- tract with NCHS to provide data that meet the NCHS national standards for consistency, quality, and timeliness. All jurisdictions have vital-event certificates that largely follow the U.S. standard certificates of live birth and death and the standard report of fetal death. There is no longer a U.S. standard report of induced termination of pregnancy (induced abortion), which was eliminated from VSCP fund- ing in 1995. NCHS also stopped collecting detailed marriage and divorce data and now only publishes the monthly counts received from those states that report. The U.S. standard certificates and report are developed as a collaborative effort between the jurisdictions and NCHS. They are recom- mendations, not law. Each jurisdiction adapts the U.S. standards to meet its local needs. Some of these needs are for registration purposes, such as detailed funeral home or burial information on a death certificate. Other needs are to enhance public health data collection, such as adding a question on the birth certificate for foreign-born parents: If you were born outside the United States, how long have you lived in the United States? Vital statistics data are tremendously valuable because the data represent the universe of events, not a sample. Vital-event reporting is mandatory, as it

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APPENDIX A 81 is with many reportable diseases and conditions. However, unlike other re- portable events, reporting is virtually complete for births and deaths because families need certified copies for myriad legal, administrative, financial, and governmental purposes. Fetal death and induced termination reporting, al- though equally mandatory, are underreported because families do not have the same need for certificates. Vital statistics systems are important surveillance systems and are becom- ing increasingly valuable as electronic birth and death registration systems help speed data acquisition and processing. Birth and death records are gen- erally required by jurisdictions to be filed within 5 days of the event. This requirement, coupled with the needs of families to obtain certified copies of birth and death certificates quickly, enables jurisdictions to use their systems for surveillance. Electronic death registration systems may prove especially valuable for disease surveillance in the event of an influenza pandemic or a terrorist attack. One of the great benefits of the jurisdiction-based system is that the ju- risdictions know their data and their data providers best. At the national level, NCHS must rely on jurisdictions to know their data, monitor quality, and work with their data providers. Vital records and statistics staff see the records as they come in, either electronically or on paper. This oversight presents opportunities to evaluate data quality and to look for systematic errors caused by specific hospitals, birthing centers, medical examiners and coroners, and funeral directors. Jurisdiction staff also interact directly with families who are applying for certified copies and for corrections and amend- ments to records. Complaints and errors recognized here may point to filing and procedural problems in the providing institutions. Unfortunately, data providers do not work for vital statistics. They are the physicians, nurse midwives, medical examiners, coroners, funeral direc- tors, hospital and clinic directors, clerks, and temporary staff who complete the worksheets and certificates that eventually become data. The challenge for vital statistics staff is to maintain and improve data quality. That work includes training, educating, and querying providers about birth and death data and causes of death, and conducting active surveillance for fetal deaths and induced terminations of pregnancy. Underreporting of deaths among extremely-low-birth-weight infants is a special concern because of its impact on infant mortality rates (Paulson et al., 2007). Underreporting of these infant deaths is likely because of extremely short lives and confusion over whether to report them as live-born infants or fetal deaths. It is the responsibility of jurisdiction vital statistics offices and staff to work with and know their data so that they can conduct rigorous follow-back to data providers on very-low-birth-weight infants.

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82 VITAL STATISTICS National Security Birth certificates are breeder documents. In the United States, birth con- fers citizenship, and birth certificates constitute the proof. Thus, birth cer- tificates are used by SSA to generate Social Security numbers, by the U.S. Department of State as evidence for passports, and by state departments of motor vehicles to issue driver’s licenses. Vital records offices always have had to protect against fraud. Alterations to birth certificates can be used to change identities or to steal them. Death certificates may be altered to commit fraud against insurance companies or to escape arrest warrants. The events of 9/11 and escalating identity theft have sensitized all vital records offices to the risks associated with birth certificate fraud. However, the vital records system was not designed to protect national security, and it is currently inadequate for the task. For example, to protect against identity theft, it is important to match death with birth certificates and then mark the birth certificate “deceased.” To be effective against fraud, this matching must be done quickly. This is not possible with current systems, since all births and deaths are neither reported nor processed fast enough to enable rapid matching. Furthermore, since a person often dies in a jurisdiction different from that of birth, a national system would be needed to permit rapid data sharing and matching. Today, most of that sharing is not automated and often done more than a year after a death. CURRENT AND FUTURE SYSTEMS Vital records offices are evolving from their original paper-based systems to web-based paperless systems. Vital records certificates for the public still will be printed on paper with a “raised seal” to indicate authenticity for the foreseeable future, but most of the systems that lead up to the paper are changing. NAPHSIS, with support from NCHS and SSA, worked with the jurisdictions to develop national models and standards. The national stan- dards facilitate jurisdictions in building these complex automated systems, thereby promoting uniformity and saving resources and time. Paper certified copies will be subject to electronic verification through the Electronic Verification of Vital Events (EVVE) system to confirm that they match true records on file in a vital records office. The State and Territorial Exchange of Vital Events (STEVE) system will greatly facilitate exchange of certificate information among jurisdiction vital records offices, NCHS, and other partners. Electronic birth and death registration systems will im- prove timeliness, efficiency, and data quality and will reduce the need for corrections. Electronic death registration systems present opportunities for improving cause-of-death reporting, although there have not yet been break-

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APPENDIX A 83 throughs. Currently, electronic systems have internal consistency checks, but they still rely on careful and accurate collection and entry of data. State and Territorial Exchange of Vital Events (STEVE) Generally, jurisdictions send all birth, death, fetal death, and induced abortion records that occurred to nonresidents to the jurisdiction of usual residence. Death records are also sent to the jurisdiction of the decedent’s birth and, for decedents less than 1 year of age, birth records are sent on request to the jurisdiction where the death occurred. Most jurisdictions and several Canadian provinces have signed an agree- ment that specifies the terms and conditions under which vital events data may be exchanged and used. However, the enforcement of its terms and conditions is not automated and is completely dependent on the vigilance of individual staff. Other formal agreements govern the exchange of data between jurisdictions and NCHS, SSA, other agencies of the Centers for Disease Control and Prevention, and other internal and external organiza- tions. Some or all of these organizations will become trading partners and users of the STEVE system. NAPHSIS has developed standard record layouts for electronic ex- change. However, most jurisdictions currently do not exchange records elec- tronically because of lack of resources and an efficient exchange platform. Instead, they may send copies, computer abstracts, or line listings to each other. Forthcoming Intelligence Reform and Terrorism Prevention Act reg- ulations may require jurisdictions to match birth and death records beyond current practices, which will affect interjurisdictional exchange procedures. Additionally, the threat of natural or man-made disasters indicates the need to report deaths nationally on a timelier basis. Therefore, the need for an improved electronic exchange platform is both important and immediate. STEVE is a Public Health Information Network–compliant, secure mes- saging system currently under development by NAPHSIS that will allow ju- risdictions to electronically trade the vital-event information they are cur- rently sharing. STEVE will be installed at each participating jurisdiction within its secure firewall. Each jurisdiction will be allowed to configure the data exchange and use rules to meet its own regulatory requirements and business practices. The detailed rules governing the exchange and use of the data will be embedded in a specialized, configurable software application. Jurisdictions may also use STEVE to send data to other approved trading partners, such as NCHS, and to authorized public health agencies and pro- grams such as immunization, newborn screening, and birth defects. Receiving jurisdictions will be able to configure multiple mailboxes on STEVE for internal state agencies and programs, such as newborn hear- ing screening, birth defects, cancer registries, child support enforcement,

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84 VITAL STATISTICS voter registration, and other programs with which they have an official data- sharing relationship. These mailboxes may be used to distribute internal records as well as interjurisdictional records, thereby eliminating the need to extract and distribute multiple data sets for programmatic use. Development began in February 2008 and a start-up trading-partner community is expected to go live by December 2008. Expansion of the trading-partner community will take place over a 2- to 3-year period, and is expected to include all 57 vital records jurisdictions, NCHS, and selected additional partners. Electronic Verification of Vital Events (EVVE) Many federal and state agencies rely on birth certificates for proof of age, proof of citizenship and identification for employment purposes, to issue benefits or other documents (e.g., driver’s licenses, Social Security cards, and passports), and to assist in determining eligibility for public programs or benefits. NAPHSIS has developed and implemented an electronic system that al- lows immediate confirmation of the information on a birth certificate pre- sented by an applicant to a government office anywhere in the nation irre- spective of the place or date of issuance. Authorized federal and state agency users via a single interface can generate an electronic query to any participat- ing vital records jurisdiction throughout the country to verify the contents of a paper birth certificate or to request an electronic certification (in lieu of the paper birth certificate). An electronic response from the participating vital records jurisdiction either verifies or denies the match with official state records. It also flags positive responses when the person matched is now de- ceased. As designed, queries could be generated and matched against 250 million birth records in vital record databases nationwide. EVVE has been tested in pilot projects with state motor vehicle admin- istration offices and federal Medicaid offices, the Office of Personnel Man- agement, and SSA. The following states are online with EVVE: Arkansas, Hawaii, Iowa, Kentucky, Minnesota, Mississippi, Missouri, Montana, North Dakota, South Dakota, and Utah. CONCLUSIONS The U.S. vital statistics system is a cooperative effort of the 57 vital regis- tration jurisdictions, NAPHSIS, and NCHS. It relies heavily on the work of each of the jurisdictions to meet its local vital registration and public health data needs. It also relies on the jurisdictions to meet national standards for data quality and timeliness as defined in the VSCP contracts. Inadequate jurisdictional resources and local demands for customer service compete for

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APPENDIX A 85 the limited staff necessary to meet national standards. New electronic sys- tems for birth and death registration and for data sharing and verification will help, but they also will be competing with new national security require- ments to protect birth certificates. In addition to new technology, leadership at the local, state, and national level is acutely needed to build a stronger national system.

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