National Association for Public Health
Statistics and Information Systems
Vital Statistics Registrar
Reference Manual
INTRODUCTION
 Purpose of Reference Manual
– Contains information for new state vital statistics registrars
and other staff in state vital statistics offices
– Covers main vital statistics areas in one document
– Primarily a reference that can be used for new registrars to
quickly obtain information on vital statistics
– Gives general information on major vital statistics issues
and topics including a brief background and/or history
– More detail can be found in other documents and
information on the NAPHSIS and/or NCHS websites
– Not intended to be all-inclusive on legal issues or current
“hot topics” (The NAPHSIS website and the NAPHSIS
LinkedIn group are good sources of information on new vital
statistics issues)
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INTRODUCTION
 Organization of Manual
– Organized in sections that can be accessed as needed
– Slide four lists the sections and indicates where each
section starts
– Sections are intended to stand alone and some information
may be repeated for clarity
– PowerPoint format allows major points to be accessed
quickly
– Not meant to be read in one sitting
– Most new vital statistics registrars will have some
background in vital statistics and will not need to read all
sections
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OUTLINE OF COURSE SECTIONS
1.
2.
3.
4.
5.
6.
7.
8.
9.
10.
11.
12.
History of Vital Statistics in the United States (slides 5-29)
NAPHSIS (slides 30-53)
Current NAPHSIS Projects and Resources (slides 54-81)
Vital Statistics Cooperative Program (slides 82-99)
National Death Index (slides 100-104)
Social Security Administration Contracts (slides 105-110)
Model State Vital Statistics Act and Regulations (slides 111-124)
US Standard Certificates & Reports (slides 125-145)
Resources for 2003 Standard Certificates (slides 146-158)
Vital Record Topics (slides 159-192)
Statistical Data from Vital Records (slides 193-208)
Cause of Death Tabulation (slides 209-222)
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Section 1
History of Vital Statistics in the
United States
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 Vital Registration in the United States
– Constitution does not provide for registration of vital events
– Process evolved as state function in US
– Different from many other countries that have national
systems
– Goal is to accurately record all vital events as they occur
– Information on vital records was originally obtained for legal
purposes
– Over time collection of information greatly expanded to
include statistical data for public health monitoring, research
and analyses
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 Early Collection of Vital Statistics
– Vital registration began in churches with recording of
christenings, marriages, and burials
– In 1632, Virginia passed a law requiring ministers to
report the events in court
– In 1639, Massachusetts required courts to keep records
of legal events of births, deaths, and marriages
– Model of reporting vital events as legal statements of fact
was followed in other colonies
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 Early Collection of Vital Statistics (cont.)
– Death reporting often contained information on cause of
death
• Useful for studying patterns of disease when epidemics
occurred
• By early 1800’s larger cities were establishing boards of
health to monitor epidemics
• In 1839 Dr. William Farr compiled information from death
records to initiate sanitary reform
• Need for better vital statistics data was recognized as the
relationship between cause of death and bad sanitary
conditions became apparent
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 Early Collection of Vital Statistics (cont.)
– In 1842, Massachusetts adopted first state registration
law in US
•
•
•
•
Required central state filing of records
Provided for standard forms, fees and penalties
Specified types of information including causes of death
Designated official responsible for filing each type of record
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 First National Vital Statistics
– First birth and death statistics published for entire US
based on information collected in 1850 decennial census
• Persons “born within the year"
• Persons " married within the year”
• “Disease, if died within the year"
– Collection of birth and death statistics in census
continued through 1900
– Census data were inaccurate and incomplete
• People do not remember all facts to report to census takers
several months after event occurred
• Census counts for deaths for 1850, 1860, and 1870 about
40% short of actual number of deaths
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 Need for Better Vital Statistics Data
– Physicians began pushing for more aggressive vital
registration system to monitor disease outbreaks
– Some cities and a few states already had vital registration
systems but used different collection methods and
different forms
– In 1879 Congress created the National Board of Health to
promote complete and uniform registration of vital events
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 Concept of “Registration Area"
– Census could accept information from areas having vital
records in satisfactory detail
• First used for 1880 census for death information
• Books of blank death certificates provided to physicians to
complete for each death they attended
• Books then collected by census takers and used to improve
accuracy of death reporting
– Massachusetts and New Jersey and several large cities
met criteria to become part of official registration area in
1880
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 Concept of “Registration Area" (cont.)
– Promotion of standards for death data collection
• Census Bureau had difficulty tabulating death records
obtained for 1880 census due to differences in collection
methods, forms used, and the manner of recording data
• For 1890, Census Bureau requested all states and cities with
a population over 5,000 to use a standard form of death
certificate
• In preparation for 1900 census, intensive efforts were again
made to promote use of a standard death certificate
• By January 1900, 12 states adopted the standard form, and 6
other states, the District of Columbia, and 71 large cities in
other states adopted the form in some manner
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 Development of Annual System for Collection of Vital
Statistics from Registration of Vital Events
– 1902 act made Bureau of the Census a full-time agency
of the federal government
– Bureau director was authorized to annually obtain copies
of records filed in vital statistics offices of states and cities
with adequate birth and death registration systems
– Effort to obtain counts of death as part of the decennial
census was abandoned
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 Development of Annual System for Collection of Vital
Statistics from Registration of Vital Events (cont.)
– Census Bureau began development of uniform system for
registration of vital events
• Developed model law for vital registration
• Drafted standard forms
• Prepared instructions for local registrars, physicians and
others filing records
• Prepared a system of mortality classification for statistical
purposes
• Developed rules of statistical practice
• Established working relationships with external groups
• Mentioned possibility of forming national association of
registrars
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 Development of Annual System for Collection of Vital
Statistics from Registration of Vital Events (cont.)
– In 1907 American Public Health Association (APHA)
established Vital Statistics Section
• Promoted more effective vital statistics systems
• Strong support for model law for registration of births and
deaths
– About 1913 Census Bureau began placing agents in state
health agencies
• To promote vital statistics registration
• To improve the quality of information on vital records
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 Development of Annual System for Collection of Vital
Statistics from Registration of Vital Events (cont.)
– Census Bureau publications
•
•
•
•
First annual report on mortality statistics published in 1906
Data was included for five years from 1900 to 1904
Each year treated as a separate annual report
Contained details on deaths for registration area states and
cities
–
–
–
–
By month of death
Age at death
Sex
Color
– Cause of death
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 Development of Annual System for Collection of Vital
Statistics from Registration of Vital Events (cont.)
– Census Bureau publications (cont.)
• By 1914 Bureau published first table separating resident
deaths from nonresident (previously only published by place
where event occurred)
• Birth registration area formed in 1915
– Bureau began publishing annual natality data
– 1915 volume had data for 10 states & District of Colombia
– Tables included data on
»
»
»
»
»
Month of birth
Sex
Color
Parent nativity of white children
Deaths to children under one year of age
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 Development of Annual System for Collection of Vital
Statistics from Registration of Vital Events (cont.)
– Efforts to increase states in registration area
• Slow growth in number of states included in birth and death
registration areas
• In 1924, Bureau established a committee to bring all states
into registration areas by 1930
• Also in 1924, Census Notification of Birth Registration was
developed to be mailed to parents by state vital statistics
offices when they received birth certificates
• Effort made to educate boards of health, physicians, and
citizens about the need for vital statistics data for public health
• Not until 1933 were all states included in registration areas for
births and deaths
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 Strengthening and Improving Vital Statistics
– In 1935 Halbert L. Dunn, a physician and biometrician,
became director of the Division of Vital Statistics within
the Census Bureau
• Division was reorganized and professional staff was increased
• Field work was expanded to improve completeness and
accuracy of data on original certificates
• Activities between federal and state offices were coordinated
to eliminate duplication of effort
• Research into new fields of vital statistics was begun
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 Strengthening and Improving Vital Statistics (cont.)
– New innovations in vital statistics
• Births and deaths reported by place of residence of mother or
decedent starting in 1935
• Monthly reporting system to provide provisional figures on
births
• Series of special monographs
• Expansion of annual volumes
• Standardization of rates for age
• Extension of tabulations by age group
• More analytical and interpretive material
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 Strengthening and Improving Vital Statistics (cont.)
– Collection of national marriage and divorce data began in
1940
• Followed pattern used for births and deaths
• Transcripts of marriage and divorce records collected from
state vital statistics offices
• Marriage and divorce data collection was suspended during
World War II
• In 1944 publication of occurrences by state was resumed
• In 1957 the Marriage Registration Area was established with
30 states and 4 territories
• In 1958 the Divorce Registration Area was established with 16
states and 1 territory
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 Increased Need for Vital Records and Statistics
– By 1930s responsibility for state vital records had largely
moved from civil offices to health departments
– Use of vital records for public health statistical analysis
expanded
– More individuals needed birth records to prove “facts”
about themselves
• Enactment of legislation such as Social Security and
beginning of pension plans
• In 1940 employment in defense industry required proof of
citizenship
• With World War II, legislation provided for a maternal and
infant care program for dependents of service men
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 Increased Need for Vital Records and Statistics (cont.)
– Some states stopped statistical functions to prepare
certified copies
– Many births had never been registered
• States became overwhelmed with problem of filing delayed
birth records
• To meet demand for delayed birth records, states
implemented a variety of methods
• Federal agencies were confused by the many different
procedures
• Pressure began to grow for greater uniformity
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 Move to Public Health Service
– Recognizing problems with the national vital statistics
system, the US Budget Bureau was asked by the
President to recommend improvements
– In 1943, based on a report from the Association of State
and Territorial Health Officers, the Budget Bureau
recommended
• “A national vital records office” should be established in the
US Public Health Service
• The new office should assume functions of the Division of
Vital Statistics in the Census Bureau
• State and local vital statistics responsibility should be
preserved
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 Move to Public Health Service (cont.)
– The national office would work with state and local vital
statistics agencies to develop a nationwide vital statistics
system
• Promote higher standards of performance
• Promote better coordination among state and local vital
statistics agencies
– In 1946 the National Office of Vital Statistics was
established in the Public Health Service
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 National Center for Health Statistics
– In 1960 the National Office of Vital Statistics merged with
the National Health Survey to become the National
Center for Health Statistics (NCHS)
– NCHS was reorganized in 1963 with the Division of Vital
Statistics (DVS) becoming one of 5 operating divisions
• Emphasis placed on analysis versus just collection and
dissemination of data
• Emphasis on methodological research including registration
methods for vital events
• Increased relationships with states
• New areas of data collection including institutional data and
follow-back surveys
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 National Center for Health Statistics (cont.)
– NCHS’s mandate was codified in the Public Health
Service Act in 1974
• Collect statistics on health-related subjects including vital
events
• Provide technical assistance to state and local areas
• Conduct and support research regarding survey methods
• Established National Committee on Vital and Health Statistics
(NCVHS) as advisory committee to the Secretary of the
Department of Health, Education, and Welfare
– In 1987, NCHS became part of the Centers for Disease
Control (CDC) in the Department of Health and Human
Services (DHHS)
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HISTORY OF VITAL STATISTICS IN THE UNITED STATES
 National Center for Health Statistics (cont.)
– Currently four major data collection programs
• National Vital Statistics System (NVSS)
• National Health Interview Survey (NHIS) – data on health
status of US population conducted through household
interviews
• National Health and Nutrition Examination Survey (NHANES)
– assesses health and nutritional status of US population
using mobile examination centers
• National Health Care Surveys – data on organizations and
providers of health care
(Additional information on the more recent history of vital statistics in
the US is provided under specific topics in other sections of this
document)
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Section 2
National Association for Public
Health Statistics and Information
Systems (NAPHSIS)
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NAPHSIS
 Introduction
– Represents state and local vital records, health statistics
and information system agencies
– Incorporated as a nonprofit in the District of Columbia
– Tax exempt under section 501(c)(3) of Internal Revenue
Code
– Offices in Silver Spring, Maryland
– Staff
•
•
•
•
•
Executive Director
Associate Director
Several project managers and directors
Administrative support staff
Additional consultants as needed for special projects
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NAPHSIS
 Introduction (cont.)
– Web site: www.naphsis.org
• General section with information about the Association and
vital statistics
• Members only section with special resources such as
newsletters, training and background material on issues of
current interest to members, member contact lists, etc.
– Mission: “NAPHSIS provides national leadership for both
vital records and related information systems in order to
establish and protect individual identity and improve
population health.”
– Vision: “An accurate, timely, and secure record of all vital
events in the nation.”
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NAPHSIS
 Introduction (cont.)
– Strategic plan for 2013-2016: “Establish NAPHSIS as the
proactive leader for developing, protecting, and using vital
records and statistics systems.”
•
•
•
•
•
•
A. Provide national advocacy for member jurisdictions
B. Develop and deliver quality products and services
C. Expand and strengthen NAPHSIS identity and visibility
D. Grow and diversify financial resources
E. Strengthen NAPHSIS organizational effectiveness
F. Stand and strengthen member involvement and strategic
partnerships
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NAPHSIS
 History
– Organized In 1933 as the American Association of State
Registration Executives (AASRE)
– Original membership
• Limited to “persons In Active Executive charge of the
registration of vital statistics in a state department” and
persons in similar positions in Canada, Mexico, and Cuba
• Many original members were physicians responsible for
epidemiology and vital statistics in their agencies
– Original purpose of the Association was “to study and
promote all matters relating to registration of vital
statistics”
– Representatives from 13 states attended first meeting
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NAPHSIS
 History (cont.)
– Association had many name changes over the years
• 1933 American Association of State Registration Executives
• 1938 American Association of State and Provincial
Registration Executives
• 1939 American Association of Registration Executives
• 1951 American Association of Registration of Executives, Inc.
• 1955 American Association of Registration Executives
• 1958 American Association for Vital Records and Public
Health Statistics
• 1980 Association for Vital Records and Health Statistics
• 1995 Association for Public Health Statistics and Information
Systems
• 1996 National Association for Public Health Statistics and
Information Systems
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NAPHSIS
 History (cont.)
– Changes to purpose of the organization
• Original purpose kept in the By-Laws through 1949
• Purpose expanded 1950
– “to work for the development and maintenance of sound
systems of vital records that can provide the information and
services needed in the best interest of the people and their
government."
• In 1958 purpose included public health statistics and to
become advisory to ASTHO
– "to provide opportunity for discussion of and group action on
problems and policies involved in the administration of vital
records and public health statistics programs in the United
States, its territories and possessions, and to serve as an
advisory group to the Association of State and Territorial
Health Officers for these programs."
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NAPHSIS
 History (cont.)
– Changes to membership
• In 1938 membership was expanded to include executives in
charge of vital statistics in US possessions and in provincial
departments in Canada, Mexico, and Cuba, and in registration
areas of New York City, Baltimore, and Washington, DC
• In 1946 registration areas of Boston and New Orleans were
added
• A category of Life Member was also added in 1946 for any
member who retired after serving 20 years as a registration
executive
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NAPHSIS
 History (cont.)
– Changes to membership (cont.)
• A number of changes were made in 1950
– Membership was expanded to include persons professionally
engaged in vital records work upon election by the Executive
Board
– The concept of Governing Council was established with
members being the person in active executive charge of the
vital records system in a state or territory of the US, the
District of Columbia, registration areas of Boston, New York,
Baltimore, and New Orleans, and the provinces and territories
of Canada
– Only members of the Governing Council could vote and hold
office
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NAPHSIS
 History (cont.)
– Changes to membership (cont.)
• Additional changes in 1958 further defined membership
– Areas with distinct programs in vital records and health
statistics could have two members on the Governing Council
– Persons professionally engaged in vital records or public
health statistics programs in state or local health departments
could become Associate Members
– Honorary Life Membership was limited to retiring Governing
Council members
– Only Governing Council members could vote, serve as
officers, and chair committees
– Each state had one vote that was split in half if there were
two Governing Council members
• The By-Laws were later changed to allow Associate Members
to serve as Members at Large on the Executive Committee
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NAPHSIS
 Modernizing the Association
– In the late 1980s and early 1990s, several members of
the Association began to explore the idea of creating a
new image and structure
•
•
•
•
Activities of the Association had expanded greatly
With no staff, all work had to be done by the members
There was limited funding to conduct activities
While the Association was recognized as a vital records
expert, it had little clout as a public health statistics advocate
– Membership in the Association was primarily vital records
administrators and statisticians in vital statistics programs
– The Association had not had success in attracting
professional statisticians in other health statistics subject
areas
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NAPHSIS
 Modernizing the Association (cont.)
– In 1994 the AVRHS Futures Committee suggested actions
to meet current and future needs of the members
• The purpose of the Association should be revised to focus away
from administration of vital statistics to place more emphasis on
public health statistics and information systems
• The organization should be restructured to agency membership
rather than individual membership and dues should be charged
based on the population size of the registration area
• The annual meeting program should be broadened to attract
more diversified attendance and the meeting registration fee
should be increased to raise revenue
• The name of the Association should be changed to better reflect
an image as a health statistics advocate
• The Association should hire staff starting with a half time
Executive Director and obtain office space
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NAPHSIS
 Modernizing the Association (cont.)
– Major changes were made to the By-Laws in 1995 to
implement suggestions of the Futures Committee
• The name of the organization was changed to Association for
Public Health Statistics and Information Systems with National
added one year later
• The purpose was greatly expanded as follows
– “This Association will foster discussion and group action on
issues involving public health statistics, public health information
systems, and vital records registration. The Association will
provide standards and principles for administering public health
statistics, public health information systems, and vital records
registration. The Association will represent the States and
Territories of the United States regarding these issues, and will
serve as an advisory group to the Association of State and
Territorial Health Officials."
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NAPHSIS
 Modernizing the Association (cont.)
– Changes made to the By-Laws in 1995 (cont.)
• Membership in the Association
– Changed from individual membership to Agency Membership
with each agency able to designate up to four staff persons
as voting members
– Additional Individual Memberships could be purchased for
agency staff
– Category of Affiliate Membership was added as a non-voting
for persons interested in furthering improvements in health
statistics and for staff in vital statistics in the provinces of
Canada and the states of Mexico
– Honorary Life Membership could be awarded to anyone
leaving the Association by majority vote of the Executive
Committee
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NAPHSIS
 Modernizing the Association (cont.)
– Changes made to the By-Laws in 1995 (cont.)
• Dues structure
– With the change to Agency Membership, the dues were set to
be based on the population size of the state where the
Agency was located
» Intent for large population states to pay more than smaller ones
» Originally 5 population size groups were recommended
– Dues paid by other types of members would be set by the
Executive Committee
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NAPHSIS
 Current NAPHSIS Governing Structure
– Officers elected from Voting Membership
•
•
•
•
•
President
President-elect
Secretary
Treasurer
Serve two-year terms (Treasurer may be re-elected to a
second consecutive term)
– Board of Directors
• Officers of the Association
• Immediate Past President
• Four Members at Large elected from Voting Membership
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NAPHSIS
 NAPHSIS Meetings
– Annual meetings
• Annual meetings were held from 1933 through 1955
• From 1956 through 1968 biennial meetings were held
• In 1969, the Association went back to annual meetings which
continue today
– Regional meetings
• Over the years, various regional structures were established in
the Association and regional meetings were usually held
• Formal Association sponsored regional meetings ceased for a
period of time as resources became scarce, but a few states
continued to meet to discuss and resolve common issues
• With the addition of paid staff, regional meetings were reinitiated with most states attending the one in their area
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NAPHSIS
 NAPHSIS Awards
– Halbert L. Dunn Award
• Established in 1981 and presented at NAPHSIS annual
meeting
• Recognizes those who have made outstanding and lasting
contributions to the fields of vital records and public health
statistics
• Honors Halbert L. Dunn, M.D., the Director of the National
Office of Vital Statistics from 1946 to 1960
• Through 2012, twenty-seven people have been honored with
this award
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NAPHSIS
 NAPHSIS Awards (cont.)
– Triumph Awards
• Established in 2006 to honor Association members who have
bettered the vital records and health statistics field
– Mentor Award – honors those who encourage colleagues to
realize their full potential and help others achieve their best
– Rising Star Award – recognizes the best new talent employed
in the vital records and/or public health statistics and
information systems area less than five years
– Shining Star Achievement Award (added 2008) – honors an
individual or team for extraordinary achievements that make a
difference in the vital records and public health statistics and
information systems field
– Special awards such as the President's Award or other forms of
recognition are occasionally presented to Association members
and others to recognize special achievements or accomplishments
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NAPHSIS
 Benefits of NAPHSIS Membership
– NAPHSIS provides the following services for members:
• Leadership in national standard-setting in the health information
arena
• Communication and networking capabilities among members
• Training and educational services and programs for members
• An annual business meeting and educational program covering
topics of current interest to the members
• Liaison and representation with federal agencies, national and
international organizations involved in public health statistics
information systems, and vital records
• Periodic information dissemination to members and other parties
through the newsletter and electronic communication
• Assistance to members in responding to daily challenges of
managing public health statistics, information systems and vital
records
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NAPHSIS
 NAPHSIS Relationship with Federal Agencies
– Long-standing relationship with federal agencies
• Original Constitution of Association made Chief Statistician for
Vital Statistics in the US Census Bureau an ex officio member
• Staff from federal agencies, particularly the national vital
statistics agency, always participated in annual meetings
• For many years the Association annual meeting was held with
the NCHS Public Health Conference on Records and Statistics
• For the past several years NAPHSIS annual meeting has been
held jointly with NCHS VSCP Project Director’s Meeting
• Representatives from other federal agencies such as Passport,
Centers for Disease Control, Maternal and Child Health Bureau
in HRSA, Social Security Administration, Department of
Homeland Security, Department of Justice, etc. participate in
annual meetings
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NAPHSIS
 NAPHSIS Relationship with Federal Agencies (cont.)
– Participates jointly with NCHS in setting standards for
collection, processing and dissemination of vital statistics in
areas such as
•
•
•
•
Standard certificates and reporting instructions
Model Act and Regulations
Training and quality control materials
Improving the National Vital Statistics System
– Acts as the state representative in negotiating contracts
with federal agencies
•
•
•
•
VSCP
National Death Index (NDI)
SSA Enumeration at Birth
SSA Death
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NAPHSIS
 NAPHSIS Relationship with Federal Agencies (cont.)
– Cooperative Agreement with NCHS
• In 2007 NAPHSIS began 5-year cooperative agreement with
NCHS
– Called State Vital Statistics Improvement (VSI) Program
– Agreement has been renewed for a second 5-year term
• Focus of Cooperative Agreement
– Provide technical assistance to the states for re-engineering
vital records systems and implementing 2003 standard
certificates
– Development and promotion of standards and best practices
» Standards for security of vital records and fraud prevention
» Performance measures for all aspects of vital statistics offices
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NAPHSIS
 NAPHSIS Relationship with Federal Agencies (cont.)
– Cooperative Agreement with NCHS (cont.)
• Focus of Cooperative Agreement (cont.)
– Training for vital statistics staff
– Support for State and Territorial Exchange of Vital Events
(STEVE)
» Allows NAPHSIS to provide assistance to states for planning and
installation
» Pays for the year two and beyond maintenance fees
(Additional information on projects supported by the Cooperative
Agreement may be found in Section 3, Current NAPHSIS Projects)
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Section 3
Current NAPHSIS
Projects and Resources
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CURRENT NAPHSIS PROJECTS AND RESOURCES
 Inter-Jurisdictional Exchange (IJE) Agreement
– Provides a method for states to get vital event data for their
residents whose events occur in other states
– Administered by NAPHSIS
– Information exchanged through IJE
• Non-resident vital event information (births, deaths, fetal deaths,
and induced terminations of pregnancy) sent to state of
residence
• Death information also sent to state of decedent’s birth for
linking
• For infants under one year of age at death, state of death may
request a copy of birth certificate from state of birth
– Agreement should be signed by all jurisdictions
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CURRENT NAPHSIS PROJECTS AND RESOURCES
 Inter-Jurisdictional Exchange (IJE) Agreement (cont.)
– Agreement contents
• Specifies restrictions on use of sending state’s vital records by
receiving state in accordance with sending state’s legal
requirements
• Receiving states must agree to abide by the restrictions of
sending states
• Generally IJE agreement runs for five years
– Records traditionally sent to receiving states in form of
paper copies, computer listings, or data files
– Most states are now switching to data transmission through
the State and Territorial Exchange of Vital Events (STEVE)
system
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CURRENT NAPHSIS PROJECTS AND RESOURCES
 STEVE (State and Territorial Exchange of Vital Events)
– Web based system for exchanging vital events between
states using standard IJE file layouts
– Software application developed by NAPHSIS
• Automates point-to-point exchange of IJE vital event (birth,
death, fetal death, and induced termination of pregnancy) data
in a standardized file format
• Replaces practice of exchanging paper copies and computer
abstracts currently used by most states
• Will automatically strip off and send reportable data to NCHS
according to VSCP contract requirements
• Can send data to other approved state programs such as
newborn hearing screening, immunization, voter registration,
etc. via a system of "mailboxes" and data export tools
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CURRENT NAPHSIS PROJECTS AND RESOURCES
 STEVE (cont.)
– Can create customized data file that can be used for
approved research
– Will eventually be required for reporting VSCP statistical
data to NCHS replacing Secure Data Network (SDN)
– STEVE currently being used in a number of jurisdictions
• Installed in five pilot states in 2009
• All 57 jurisdictions expected to use STEVE along with NCHS
• As of July 2013, 34 jurisdictions had installed STEVE with an
additional 14 in progress or planning stages
• In future STEVE can be expanded to include additional federal
agencies and other trading partners
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CURRENT NAPHSIS PROJECTS AND RESOURCES
 STEVE (cont.)
– Two software components
• Transformation module
– Contains logic to transform standard state flat file layouts into
secure message packets configured to each state’s data exchange
laws and policies
– Tracks and delivers messages to secure “mailboxes" for vital
records and other authorized program users
• Controller module
– Hosted by vendor
– Central data repository of master file information collected from
each trading partner
– Allows NAPHSIS system administrator to manage trading partner
community
– Updates and new software releases "pushed" to active
transformation modules
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CURRENT NAPHSIS PROJECTS AND RESOURCES
 STEVE (cont.)
– To participate in STEVE state must
• Sign IJE Agreement
• Sign Memorandum of Agreement (MOA) with NAPHSIS
agreeing to pay annual user fee and installation charges
• Develop standard IJE file layouts
• Agree to host STEVE software on its server behind its firewall
• Provide secure connectivity from STEVE through its firewall to
the Internet
• Configure its data exchange and use rules within STEVE
– NAPHSIS will assist states with planning and carrying out
the installation
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CURRENT NAPHSIS PROJECTS AND RESOURCES
 EVVE (Electronic Verification of Vital Events)
– Provides federal and state agencies with a quick, easy way
to obtain information from birth or death certificates
• Government agencies can
– Verify contents of a paper birth certificate (name, age,
citizenship, parents)
– Or, request an electronic certification if they do not have a
paper birth certificate
• Examples of agencies using EVVE system
–
–
–
–
–
Motor vehicle agencies
Medicaid offices
Social Security Administration
Office of Personnel Management
Health departments
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CURRENT NAPHSIS PROJECTS AND RESOURCES
 EVVE (cont.)
– Process
• User agency submits electronic query to participating vital
records jurisdictions
• Query is sent to EVVE system via an XML message called a
vital event transaction
• EVVE system routes query to appropriate jurisdiction
• Software installed in jurisdiction receives query and runs query
against automated search system maintained in jurisdiction
• Software constructs a response to query and returns response
to EVVE hub
• EVVE hub returns response to requesting user agency
• Transaction is logged and user agency is billed for transaction
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CURRENT NAPHSIS PROJECTS AND RESOURCES
 EVVE (cont.)
– Advantages of EVVE
• Minimizes opportunities for network security breach
• Reduces opportunity for users outside of a jurisdiction’s vital
records office to “browse” records in jurisdiction’s database
• Easy for government agency requesters to use system
• Jurisdictions do not lose revenue
• All transactions are logged so that any unusual activities can be
traced back to requesting agency
– NAPHSIS will assist states with planning and carrying out
the installation
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CURRENT NAPHSIS PROJECTS AND RESOURCES
 Technical Assistance
– Need for technical assistance was recognized as states
began reengineering their vital records systems
• Vital records offices faced a variety of problems
– Implementation of the 2003 standard certificates
– Higher expectations of data quality and timeliness
– Costly reengineering projects in various state offices
• Standards-based uniform systematic approach needed
– Rethinking and redesign of business processes (reengineering)
– Use of new technologies to support reengineering
– Integrated vital records system that covers birth and death
registration, certification and back office processes
– Use of collaboration to decrease costs and improve chance for
success
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CURRENT NAPHSIS PROJECTS AND RESOURCES
 Technical Assistance (cont.)
– Partners involved in reengineering
• SSA provided funds to assist states in developing electronic
death registration (EDR) systems
• NCHS provided funds and staff to
– Facilitate the overall planning for reengineering
– Develop requirements for model electronic birth (EBR) and
death (EDR) registration systems
– Coordinate requirements planning between birth and death
registration groups
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CURRENT NAPHSIS PROJECTS AND RESOURCES
 Technical Assistance (cont.)
– Reengineering Oversight Committee was established with
representatives from NAPHSIS, NCHS and SSA
– Subcommittees with many additional state representatives
covered
•
•
•
•
•
•
Electronic birth registration (EBR)
Electronic death registration (EDR)
Reports/files/outputs
Information technology
Certification and point-of-sale
Data analysis
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CURRENT NAPHSIS PROJECTS AND RESOURCES
 Technical Assistance (cont.)
– Process included
• Use case analysis
– Define, analyze and document user system interactions
– Determine commonalities
– Determine functional requirements including business rules
• Technical guidelines
– Infrastructure requirements
– System performance requirements
– Scalability
– Disaster recovery
– Archival issues
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CURRENT NAPHSIS PROJECTS AND RESOURCES
 Technical Assistance (cont.)
– Documents developed are available on NAPHSIS website
•
•
•
•
Use case narratives and diagrams
System requirements and business rules
Glossary and acronyms
White papers such as
– Birth/death matching
– Vital records authentication and risk analysis
– Certification/POS ideas in reengineering
• Suggested management reports
– Information from a variety of states added to NAPHSIS
website as states began implementation and development
of RFP's
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CURRENT NAPHSIS PROJECTS AND RESOURCES
 Technical Assistance (cont.)
– NAPHSIS can provide direct technical support to states
• Collaborates with NCHS to identify and work with jurisdictions
having problems meeting timeliness and data quality
requirements of VSCP contracts
• Provides assistance in implementation of EDR & EBR systems
• Provides assistance for reengineering vital records systems and
implementing 2003 revised certificates
• Can furnish specialized consultant to work with state
– Makes site visit to review current state processes & procedures
– Conducts in-depth assessment of issues in state
– Makes detailed recommendations for business process
improvement in registration, customer service, & statistics
operations
Vital Statistics Registrar Ref Manual
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CURRENT NAPHSIS PROJECTS AND RESOURCES

Security Standards and Fraud Prevention
– Intelligence Reform Legislation
• Passed in 2004 as the Intelligence Reform and Terrorism
Prevention Act (US Public Law 108-458)
• Section 7211 contains minimum standards for birth certificates
• Designates Secretary of Health and Human Services (HHS) to
promulgate regulations
• States certain requirements for birth certificates
– “certification of the birth certificate by the State or local
government custodian of record that issued the certificate”
– “use of safety paper or an alternative, equally secure medium”
– “seal of the issuing custodian of record”
– “other features designed to prevent tampering, counterfeiting,
or otherwise duplicating the birth certificate for fraudulent
purposes”

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CURRENT NAPHSIS PROJECTS AND RESOURCES

Security Standards and Fraud Prevention (cont.)
– Intelligence Reform Legislation (cont.)
• Additional requirements
–
–
–
–
Proof and verification of identity for issuance purposes
Standards for processing applications to prevent fraud
May not require single design for all birth certificates
Must accommodate differences between states in “the manner
and form in which records are stored and birth certificates are
produced from such records”
• In 2005 NCHS began working on regulations
– Sought input from SSA, Homeland Security, other federal
agencies and NAPHSIS members
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CURRENT NAPHSIS PROJECTS AND RESOURCES

Security Standards and Fraud Prevention (cont.)
– Intelligence Reform Legislation (cont.)
• In 2005 NCHS began working on regulations (cont.)
– Established 5 workgroups to make recommendations for
regulations
»
»
»
»
»
Minimum paper and format standards for birth certificate
Standards and best practices for physical plant security
Standards and best practices for issuance of certificates
Minimum processing standards up to the issuance of certificates
Minimum systems standards for states to qualify for grants to support
computerization of vital registration systems
• Draft report released by NCHS for comment in October 2005
and new draft prepared
• No additional action on regulations as of July 2013
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CURRENT NAPHSIS PROJECTS AND RESOURCES

Security Standards and Fraud Prevention (cont.)
– NAPHSIS committees continued working on security and
fraud prevention guidelines
– Developed guidelines based on
• Model State Vital Statistics Act and Regulations
• Recommendations of intelligence reform workgroups
• Best practices used in various states
– Security Guide covers
•
•
•
•
•
•
Delayed birth registration
Out of institution births
Birth certification documents
Access to vital records
Issuance of a birth certification document
Physical security in vital records facility
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CURRENT NAPHSIS PROJECTS AND RESOURCES

Security Standards and Fraud Prevention (cont.)
– NAPHSIS standards developed on
•
•
•
•
Management of security paper
Limited access to records
Employee background checks
Penalty for fraudulent acquisition
– Additional standards in development
– Available on NAPHSIS website for members
Vital Statistics Registrar Ref Manual
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CURRENT NAPHSIS PROJECTS AND RESOURCES

Security Standards and Fraud Prevention (cont.)
– Security coordinator position
• Motion 2006–01 passed by NAPHSIS members
• Recommends each jurisdiction designate a security coordinator
• Job functions
– Establish office security and fraud prevention standards
– Work with law enforcement on issues regarding vital statistics
documents
– Provide training to vital records staff on security/fraud
prevention issues
– Implement NAPHSIS recommended security standards and
guidelines
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CURRENT NAPHSIS PROJECTS AND RESOURCES

Performance Standards
– NAPHSIS developed performance measures to
•
•
•
•
Assist vital records offices in assessing their performance
Encourage improvement
Enhance national vital statistics system
Provide information for gaining support from senior
management for vital records improvement
– Cover all aspects of vital records office
•
•
•
•
•
Registration
Security
Issuance
Data collection and quality assurance
Data transmission
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CURRENT NAPHSIS PROJECTS AND RESOURCES

Performance Standards (cont.)
– Cover all aspects of vital records office (cont.)
•
•
•
•
•
Data analysis and dissemination
Staff supervision and training
Training of other persons associated with vital records
Data and record preservation
Policies and procedures
– Piloted by 12 vital records jurisdictions
• Modifications made based on input from pilot jurisdiction
• Felt standards beneficial
• Requested aggregate information on how they compared with
other jurisdictions
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CURRENT NAPHSIS PROJECTS AND RESOURCES

Performance Standards (cont.)
– Selected measures will be used for comparison
• Standards are primarily for internal state assessment
• Information will be collected by NAPHSIS from all states on
small set of measures every 2-3 years
• Determine level of national conformance to standards
• Information only released in non-identifiable aggregate form for
comparison
• “Report card” provided to each state showing status on these
measures
• Serve as a basis for improvement
– A copy is available on the NAPHSIS website
Vital Statistics Registrar Ref Manual
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CURRENT NAPHSIS PROJECTS AND RESOURCES

NAPHSIS Training
– Offers training opportunities at regional and annual
meetings
– Hosts webinars for members
• Information and updates on issues
• Current “hot” topics
• Presentations from members on best practices
– Develops training materials for members
– Assists states in developing training materials for data
providers such as hospital clerks, funeral directors, and
medical certifiers
Vital Statistics Registrar Ref Manual
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CURRENT NAPHSIS PROJECTS AND RESOURCES

NAPHSIS Training (cont.)
– Extensive library of training material on website
•
•
•
•
•
•
•
•
•
•
Cause of death training
Birth certificate training
PowerPoint presentations from training calls
Sample state training materials
Links to information for vital statistics registrars
List of vital and health statistics courses offered by universities
Statistical measures and definitions
Examples of state statistical reports
Links to state web based data query systems
Links to state software code sharing
Vital Statistics Registrar Ref Manual
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CURRENT NAPHSIS PROJECTS AND RESOURCES

Special Member Information
– Executive Director’s newsletters distributed monthly
– On NAPHSIS website
• Member to Member
– Updates from NAPHSIS president
– News from state members
– Committee reports
• Minutes of board meetings
• Lists of contacts in state vital statistics offices
– LinkedIn group
• Provides a way for members to share information on vital record
issues
• Allows members to question other states on how to resolve
problems
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Section 4
Vital Statistics Cooperative
Program (VSCP)
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VITAL STATISTICS COOPERATIVE PROGRAM (VSCP)
 Long Term Relationship Between States and Federal
Government
– US has a decentralized system with states responsible for
registration of vital records
– Since 1933, all states have been providing birth and
death information for inclusion in national statistics
– In 1946 responsibility for national vital statistics was
moved from the Census Bureau to the Public Health
Service
– In 1974, the Public Health Services Act established a
mandate for NCHS to collect health statistics on a broad
range of topics
Vital Statistics Registrar Ref Manual
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VITAL STATISTICS COOPERATIVE PROGRAM (VSCP)
 Provision of State Data to NCHS
– States sent copies (usually on microfilm) of vital records
to NCHS
– Reimbursed at four cents per record
– NCHS coded, keyed, edited, and tabulated the data
– Duplicative effort by states and NCHS to process data
Vital Statistics Registrar Ref Manual
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VITAL STATISTICS COOPERATIVE PROGRAM (VSCP)
 Beginnings of VSCP
– In 1971 Florida began sending coded data to NCHS on
computer tape without funding
– By 1973 six states entered into contracts with NCHS to
provide birth and demographic death data coded to
NCHS specifications on computer tape
– NCHS would pay a portion of state costs
– Formal arrangement was named the Vital Statistics
Cooperative Program (VSCP)
– Existing funds were not sufficient to bring all technically
ready states into the VSCP
Vital Statistics Registrar Ref Manual
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VITAL STATISTICS COOPERATIVE PROGRAM (VSCP)
 Cooperative Health Statistics System (CHSS)
– Established in 1978 to produce “comparable and uniform
health information and statistics”
• Emphasis placed on cooperative relationship between federal,
state and local governments
• Standards for collecting, processing and analyzing health data
• Eliminate duplicative efforts, more efficient use of resources,
and equitable cost-sharing
– Vital statistics was one of seven components included in
CHSS system
– The existing national vital statistics system (VSCP) was
the first component of CHSS to be funded
Vital Statistics Registrar Ref Manual
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VITAL STATISTICS COOPERATIVE PROGRAM (VSCP)
 Working Group for Completion of the VSCP
– Established in 1981 to develop formula for equitable
allocation of funds among states
• Previously no equitable funding arrangement for states
• Best negotiators got the most funds
– Members from AVRHS (now NAPHSIS) and NCHS
– Formula developed by Working Group attempted to
determine “true cost" of providing data
• Included costs for tasks at state/local areas necessary for
producing vital statistics
• Presented a rationale for “federal share” of costs
– Formula used to distribute VSCP funds beginning with
fiscal year 1983
Vital Statistics Registrar Ref Manual
87
VITAL STATISTICS COOPERATIVE PROGRAM (VSCP)
 Working Group to Review the VSCP Cost Formula
– Established in 1986
– Members from AVRHS and NCHS
– Working Group recommendations included
• Updating cost formula to fixed base level with annual cost-ofliving adjustments (COLA) and reduction in deliverables if
COLAs are not achieved
• Eliminating reference to “federal share"
• Focus on collection of minimum basic data set of items
• Requirement for states to report all minimum basic data set
items to receive full funding
Vital Statistics Registrar Ref Manual
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VITAL STATISTICS COOPERATIVE PROGRAM (VSCP)
 Working Group to Review the VSCP Cost Formula
(cont.)
– Working Group recommendations included (cont.)
• Requirement for new funds for implementation of new
components
• Clarifying NCHS rights in the data and including restrictions on
use of source documents
• Better procedures to handle administration of the VSCP
contracts
– Revised formula was implemented for fiscal year 1989
Vital Statistics Registrar Ref Manual
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VITAL STATISTICS COOPERATIVE PROGRAM (VSCP)
 Second Working Group to Review VSCP Cost Formula
– Established in 1992 with representatives from AVRHS
and NCHS
– Working Group findings
• Current formula equitably distributed funds among states
• No changes to formula were recommended
• With increase in state automation, current formula did not
adequately reflect state operations and costs
• An appropriate cost and staffing model to reflect an automated
vital records system should be jointly developed by NCHS and
AVRHS prior to the next VSCP contract revision
Vital Statistics Registrar Ref Manual
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VITAL STATISTICS COOPERATIVE PROGRAM (VSCP)
 Second Working Group to Review VSCP Cost Formula (cont.)
– Working Group findings (cont.)
• Current formula was inadequate to reflect future vital statistics
systems
– Need more timely data to be used as a surveillance tool
– Change way states and NCHS process vital statistics data
– Goals should be set for improving timeliness of transmission of
state data to NCHS
– States should send data to NCHS as records received and
initially processed rather than waiting for full quality control
with updated records transmitted later
• To reflect cooperative nature of vital statistics system, a formal
MOU should be signed between NCHS and AVRHS
– Minimal changes to the VSCP cost formula implemented
starting with fiscal year 1995
Vital Statistics Registrar Ref Manual
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VITAL STATISTICS COOPERATIVE PROGRAM (VSCP)
 Simplification of VSCP Formula
– In 1998 another NCHS/NAPHSIS Working Group was
established to evaluate the VSCP formula
– Major changes to VSCP formula by Working Group
• Greatly simplified the formula
• Previous formula was overly complicated
• Formula did not reflect various levels of automation used in
registration areas
• A formula based on cost was no longer relevant
Vital Statistics Registrar Ref Manual
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VITAL STATISTICS COOPERATIVE PROGRAM (VSCP)
 Simplification of VSCP Formula (cont.)
– Major changes to VSCP formula by Working Group (cont.)
• New distribution formula would include
– An equal funding base for all registration areas
– A price per record for each type of record which declined as
volume increases
– A price for each area’s square miles and for each licensed
hospital
– A salary adjustment factor which reflected differences in cost
of staff in different areas
– A cost of living adjustment each year
– A minimum level of funding for low level registration areas
Vital Statistics Registrar Ref Manual
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VITAL STATISTICS COOPERATIVE PROGRAM (VSCP)
 Simplification of VSCP Formula (cont.)
– VSCP contract was established as purchasing a data set
rather than specific data items
– The Working Group also recommended
• NCHS and NAPHSIS work jointly with individual registration
areas where problems exist
• Registration areas have option to eliminate cause-of-death
reject coding with a deduction in funding from VSCP contract
• Additional funding be provided through VSCP contracts on a
one-time basis to assist with implementation of the new
certificate revisions
– New VSCP formula implemented in 5-year contract
starting in fiscal year 2000 and remained in effect with
contract revisions through 2011
Vital Statistics Registrar Ref Manual
94
VITAL STATISTICS COOPERATIVE PROGRAM (VSCP)
 Problems with VSCP Contract
– Since beginning of the VSCP, NCHS has had problems
retaining adequate funding for the program
• Originally NCHS cut individual data items and data sets such
as marriages, divorces, and induced pregnancy terminations
• With the concept of data sets implemented in 2000, NCHS
began cutting the VSCP contract by decreasing the number of
days per year of data purchased if funds were not available to
purchase an entire year
• No funding was provided to assist states with implementation
of the new (2003) standard certificates at that time
(Note: NCHS later provided a nominal amount to states that
had revised their birth certificates before the end of 2011)
Vital Statistics Registrar Ref Manual
95
VITAL STATISTICS COOPERATIVE PROGRAM (VSCP)
 Problems with VSCP Contract (cont.)
– NAPHSIS had numerous discussions with NCHS on
problems with submission of data by states
• Some registration areas implemented the 2003 standard
certificates, but others did not resulting in the need for NCHS
to handle two different data sets
• NCHS and its users wanted the new standard certificate data
items from all states for analysis and research
• Several states were having major problems with timely
submission of data to NCHS
– Improvements were needed for the entire national vital
statistics system
Vital Statistics Registrar Ref Manual
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VITAL STATISTICS COOPERATIVE PROGRAM (VSCP)
 Current VSCP Contract
– Implemented in 2012 as 5-year contract
– Intent to improve the national vital statistics system –
“getting from good to great”
– All states designated NAPHSIS as their agent in
negotiations with NCHS
– NCHS provided a Statement of Work (SOW) with
NAPHSIS making recommendations for revisions
– Most of NAPHSIS’s recommendations were accepted
Vital Statistics Registrar Ref Manual
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VITAL STATISTICS COOPERATIVE PROGRAM (VSCP)
 Current VSCP Contract (cont.)
– Contract includes
• Shortened timelines for submission of data to NCHS
– Birth final file moved from April 15 to March 1
– Death final file moved from June 15 to May 1
• Corrective Action Plan (CAP) for states not meeting contract
requirements
– Plan must specify actions a state will take to overcome
significant problems
– Examples of problems requiring CAP
» Failure to use current revision of standard certificates
» Failure to meet timeliness and/or data quality requirements
• NCHS/NAPHSIS partnership to help states with CAP
improve
Vital Statistics Registrar Ref Manual
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VITAL STATISTICS COOPERATIVE PROGRAM (VSCP)
 Current VSCP Contract (cont.)
– Contract includes (cont.)
• Requirement for all states to use 2003 standard certificates
for births, deaths, and fetal deaths by January 1, 2014
• Provision for special projects for improving national vital
statistics system such as
– Collection of death surveillance data from pilot states
– Expanding EDR use among physicians
– Data quality research projects
– Pricing for contract based on current volume plus a
COLA each year
• Adjustment to be made for changes in volume mid contract
• Compensation included for early adopters of 2003 standard
certificates
Vital Statistics Registrar Ref Manual
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Section 5
National Death Index (NDI)
Vital Statistics Registrar Ref Manual
100
NATIONAL DEATH INDEX (NDI)
 Computerized Index of Death Record Information
– Developed in 1980 to assist health researchers
• Determine if their study subjects had died
• In which state the death may have occurred
– Maintained by NCHS as a resource for epidemiologists
and other health researchers
• Solely for statistical research purposes
• May not be used for legal, administrative, or other nonresearch purposes
– Death record information goes back to 1979 and death
records are added annually
Vital Statistics Registrar Ref Manual
101
NATIONAL DEATH INDEX (NDI)
 NDI Contract with States
– NCHS obtains standard set of identifying information on
each death from state vital statistics offices
• NAPHSIS negotiated fee of $.34 per death record paid by
NCHS to states
• When NDI established, it was anticipated that researchers
would buy death certificates from states to obtain demographic
and cause of death information
– In 1997, NDI Plus was added to allow researchers to
obtain coded cause of death and demographic information
• With NDI Plus, additional revenues are distributed to each state
• A formula based on actual number of true NDI matches
occurring for that state is used to determine amount (this
amount may vary greatly from year to year)
Vital Statistics Registrar Ref Manual
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NATIONAL DEATH INDEX (NDI)
 Process for Use of NDI
– Researchers submit application for review and approval
– NAPHSIS members serve on application review panel
– Once approved, researchers submit files of study
participants to NDI for matching using various algorithms
 Information Researchers Obtain
– Indication if their study subjects have died, date of death,
state of death and death certificate number
– Can contact the state of death and obtain a copy of
death certificate following state research requirements
– Can obtain coded cause of death information using the
NDI Plus service for additional fees
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NATIONAL DEATH INDEX (NDI)
 Fees for Use of NDI
– For 100,000 records or less
• Routine NDI searches are $.15 per subject per year searched
• NDI Plus charges are $.21 per subject per year when subject’s
status (alive or dead) is unknown
• If study subject is known to be deceased, NDI plus charges are
$5.00 if researcher has no death certificate and $2.50 if researcher
has death certificate
– For 100,000 or more records known deceased
• NDI Plus charges drop to $1.00 whether or not researcher has a
death certificate
• For 500,000 records or more, the fee drops to $0.05 per record
– For 100,000 or more records of unknown vital status
• One-time two year cap, not applicable to repeat searchers thereafter
• If records exceed 2.5 million, the fee drops to $0.025 per subject per
year
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Section 6
Social Security Administration
Contracts
Vital Statistics Registrar Ref Manual
105
SOCIAL SECURITY ADMINISTRATION CONTRACTS
 Enumeration at Birth (EAB)
– Background
• Parents had to wait to get birth certificate to apply for Social
Security Number (SSN) for their child
• Many states were slow in getting certified copies of birth
certificates to parents
• To improve process, SSA established EAB program to allow
parents to request child’s SSN at hospital
• Question was added to birth certificate for parents to indicate
if they wanted the state vital statistics office to send birth
notification to SSA
• Implemented as pilot in 1987 and expanded to all states by
1997
• In 1997, SSA was also required by the Taxpayer Relief Act to
collect the SSNs of the child’s parents which are passed to
the IRS for tax administration
Vital Statistics Registrar Ref Manual
106
SOCIAL SECURITY ADMINISTRATION CONTRACTS
 Enumeration at Birth (EAB) (cont.)
– EAB Contract
• Originally states sent data files to SSA usually on tape
• Association negotiated contract with fee per record sent
with a guaranteed minimum
• Process was very slow in many states
• With the implementation of Electronic Birth Records
transmission of data to SSA greatly improved
• To encourage states to speed up the process, SSA begin
paying more for faster transmission
• States are operating under a delivery order to provide
data through June 30, 2014
• Negotiations are underway between NAPHSIS and SSA
for the next contract period
Vital Statistics Registrar Ref Manual
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SOCIAL SECURITY ADMINISTRATION CONTRACTS
 Enumeration at Birth (EAB) (cont.)
– Feedback to states
• SSA links the birth certificate number to the child’s SSN
• With permission of the parent, SSA returns the linked
SSN and birth certificate number back to the state
• The linked data may be used for public health programs
Vital Statistics Registrar Ref Manual
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SOCIAL SECURITY ADMINISTRATION CONTRACTS
 Social Security Administration Death
– Background
• SSA wanted death information from states to cut off
benefit payments
• States began sending data files of death information to
SSA
• Some states required that SSA not disclose state death
information to other agencies
• In 1993, federal legislation allowed SSA to disclose
death information received from states to other federal
agencies if those agencies paid benefits to individuals
• As states began to implement electronic death records,
SSA was an early supporter since it wanted the fact of
death quickly to terminate benefits
Vital Statistics Registrar Ref Manual
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SOCIAL SECURITY ADMINISTRATION CONTRACTS
 Social Security Administration Death (cont.)
– SSA Death Contract
• NAPHSIS negotiated contract with fee per record sent
with a guaranteed minimum
• Originally states sent data files to SSA usually on tape
• As electronic death records began to be implemented,
SSA provided support to states through NAPHSIS
• To get information on deaths as soon as possible, SSA
worked with NAPHSIS to develop software for use with
EDR systems
– Allows funeral director to verify decedent’s SSN when
entering death information in EDR
– SSA is notified of death and terminates benefits
• The current 5-year death contract began in January 2012
Vital Statistics Registrar Ref Manual
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Section 7
Model State Vital Statistics
Act and Regulations
(Model Law)
Vital Statistics Registrar Ref Manual
111
MODEL STATE VITAL STATISTICS ACT
 Purpose of Model Law
– Promotes uniformity among states in
•
•
•
•
Definitions
Registration practices
Disclosure and issuance procedures
Other functions that comprise the state system of vital
statistics
– Helps ensure that vital records will be readily acceptable
in all places as prima facie evidence of the facts
recorded therein
– Enhances the level of comparability of vital statistics
data among states
Vital Statistics Registrar Ref Manual
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MODEL STATE VITAL STATISTICS ACT
 Purpose of Model Law (cont.)
– Provides guidance to state vital statistics registrars and
state legislators when revising their state laws
•
•
•
•
•
•
•
•
•
Requires registration of all vital events occurring in state
Identifies agency authorized to register vital events
Specifies time period for registration
Specifies person responsible for registering vital event
Contains penalties for failure to comply with the law
Provides for compilation and/or publication of vital statistics
Specifies method for funding vital statistics office
States requirements for release of vital records
Specifies any supporting documentation needed for
registration – delayed births, out of hospital births
• May provide for local registration in some states
Vital Statistics Registrar Ref Manual
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MODEL STATE VITAL STATISTICS ACT
 Background
– States and NCHS work together to develop Model Law
– Model Law updated periodically
• To incorporate current social customs and practices
• To provide for use of changing electronic technology
• To provide guidance for security, confidentiality and disclosure of
vital record information
– Responsibility for revision of Model Law
• Moved from Census Bureau to US Public Health Service in 1946
• Now in Division of Vital Statistics at NCHS
 First Model Act Developed in 1907 by Census Bureau
– Covered both birth and death registration
– Provided that forms include, at minimum, items recommended
by the Census Bureau
Vital Statistics Registrar Ref Manual
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MODEL STATE VITAL STATISTICS ACT
 First Revision of Model Act
– Tentatively approved in 1940 and adopted in 1942
– Act gave a statutory definition of vital statistics as
" the registration, preparation, transcription, collection,
compilation, and preservation of data pertaining to the
dynamics of the population, in particular, data pertaining to
births, deaths, marital status, and the data and facts incidental
thereto."
– First inclusion of marriages and divorces in model
legislation pertaining to vital statistics
– First provision for standard certificate of stillbirth
– Declared vital records to be public records but restricted
the right of public inspection
Vital Statistics Registrar Ref Manual
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MODEL STATE VITAL STATISTICS ACT
 1959 Revision of the Model Act
– Did not have major changes
 Model State Vital Statistics Regulations
– First issued by NCHS in 1973 and included with the
1977 revision of the Model Act
– To augment the Model Act
– To standardize many administrative practices and
procedures in state vital statistics offices
– Recommended that both the Model Act and Regulations
be considered when a state revises its statutes
Vital Statistics Registrar Ref Manual
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MODEL STATE VITAL STATISTICS ACT
 1977 Revision of Model Act and Regulations
– Changed from a locally oriented vital statistics system to
centralized system
• Centralized system in each state for collection, processing,
registration, and certification of vital records
• All vital events reported directly to state office of vital
statistics
• Placed local offices under direct control of state registrar
• Gave state registrar option to direct local offices to perform
vital record functions when it was in the interest of efficient
and effective service
Vital Statistics Registrar Ref Manual
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MODEL STATE VITAL STATISTICS ACT
 1977 Revision of Model Act and Regulations (cont.)
– Changed fetal deaths to statistical reports instead of
permanent official records
– Recognized concerns about privacy, confidentiality, and
fraudulent use of vital records and strengthened penalty
provisions
– Standardized many administrative practices and
procedures used in vital statistics offices
Vital Statistics Registrar Ref Manual
118
MODEL STATE VITAL STATISTICS ACT
 1992 Revision of Model Act and Regulations
– Meant to be flexible to accommodate new technologies
for collection, storage, and retrieval of vital records
– Specifically allowed for electronic production and
transmission of vital records
– Strengthened provisions concerned with confidentiality
and security of vital records
• Integrity of vital records should be protected through
reasonable control of use of the records
• Disclosure of information that can identify a person or
institution named in a vital record should be restricted
• Federal agencies or researchers who receive information
from records should enter into agreements that protect the
confidentiality of information provided
Vital Statistics Registrar Ref Manual
119
MODEL STATE VITAL STATISTICS ACT
 2011 Revision of Model Act and Regulations
– Director of NCHS appointed a working group to develop
the revision
• Composed of seven persons from state vital statistics
jurisdictions, one of whom was an attorney, and a former
chief counsel of a city health department
• Meetings began in 2009
– Multiple changes in new model law
• Guidance in moving toward electronic certification and
registration of vital events
• Refocus away from paper-based registration and certification
• More emphasis on security issues than previous model law
Vital Statistics Registrar Ref Manual
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MODEL STATE VITAL STATISTICS ACT
 2011 Revision of Model Act and Regulations (cont.)
– Multiple changes in new model law (cont.)
• Sections placed in logical sequence that complements
functions of collecting, recording and managing vital records
• Introduced new terminology to accommodate electronic
systems such as
– A vital “report” is submitted and becomes a “vital record”
when accepted for registration by the state registrar (“filing”
a record is no longer used)
– “Certification” (either paper or electronic) used instead of
“certificate” or “certified copy” which refer to paper
– “Establishment of parentage” replaces the term
“legitimation”
Vital Statistics Registrar Ref Manual
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MODEL STATE VITAL STATISTICS ACT
 2011 Revision of Model Act and Regulations (cont.)
– Provisions of Model Law under 8 functional areas
• Authorities - essentially the same as the 1992 revision
• Security - new section to emphasize increased importance of
this area and recent issues with expanded use of technology
• Registration - significant revisions to section with additional
specifications for registering births, deaths, and particularly
delayed births; section on both amendments and corrections
to records
• Preservation - with electronic records, preservation includes
safeguarding the record and also protecting and maintaining
integrity of information contained in the record
Vital Statistics Registrar Ref Manual
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MODEL STATE VITAL STATISTICS ACT
 2011 Revision of Model Act and Regulations (cont.)
– Provisions of Model Law under 8 functional areas (cont.)
• Disclosure - confidentiality was made a significant part of this
section; provisions added for protection of personally
identifiable information
• Issuance - provisions added for security in issuance of vital
records; concept of a single jurisdiction wide central
database for all vital records to reduce the potential for fraud
• Fees - fees established in regulations should reflect the
approximate cost of providing the related services
• Penalties - only minor changes; amounts were increased to
reflect current generally higher penalties for similar violations
Vital Statistics Registrar Ref Manual
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MODEL STATE VITAL STATISTICS ACT
 2011 Revision of Model Act and Regulations (cont.)
– Current Status
• NAPHSIS members passed Resolution 2011-1 endorsing
the Model State Vital Statistics Act and Regulations and
encouraged states to adopt the principles and practices of
the Model when revising their legislation
• The Model State Vital Statistics Act and Regulations is
currently being reviewed by the Department of Health and
Human Services
Vital Statistics Registrar Ref Manual
124
Section 8
US Standard Certificates
and Reports
Vital Statistics Registrar Ref Manual
125
US STANDARD CERTIFICATES AND REPORTS
 Models for States to Use in Developing Their Records
– Close collaboration between NCHS and states in
development of standard certificates
– Contain information for legal and administrative purposes
• Serve as legal and personal identification
• Provide information needed by federal, state and local
government agencies for numerous social programs and
administrative purposes
– Source of data for national, state and local vital statistics
– Standardize procedures for data preparation and
processing to promote a uniform national data base
– Represent minimum basic data set necessary to meet
requirements of the VSCP contract
Vital Statistics Registrar Ref Manual
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US STANDARD CERTIFICATES AND REPORTS
 Periodic Review of Standard Certificates
– Reviewed approximately every 10 to 15 years
– Evaluated to ensure their intended uses at local, state,
and national levels are met
• Reflect changing conditions and user needs
• Revise and improve quality of information collected and
collection methods
• Assess if current items are still needed and/or if new items
should be added
– Review includes
• Persons involved in registration and statistical processes at
all levels of government
• Participation of major data users and providers
• Input from national organizations and government agencies
Vital Statistics Registrar Ref Manual
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US STANDARD CERTIFICATES AND REPORTS
 Periodic Review of Standard Certificates (cont.)
– Number of revisions
• 12 revisions of the US Standard Certificate of Live Birth
• 11 revisions of the US Standard Certificate of Death
• 8 revisions of the US Standard Report of Fetal Death
(previously stillbirth)
• 4 revisions of the US Standard Certificate of Marriage
• 4 revisions of the US Standard Certificate of Divorce,
Dissolution of Marriage or Annulment
• 2 revisions of the US Standard Report of Induced
Termination of Pregnancy
Vital Statistics Registrar Ref Manual
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US STANDARD CERTIFICATES AND REPORTS
 Early Versions of the Standard Certificates
– First standard certificates for live births and deaths were
produced by Census Bureau in 1900
– Few changes were made in content in the early years
– Early death certificate additions
• Autopsy information in 1918
• Information on injuries from external causes of death in 1930
• Social Security Number and more detail on decedent’s place
of residence in 1939
• Cause of death portion of certificate also revised in 1939
Vital Statistics Registrar Ref Manual
129
US STANDARD CERTIFICATES AND REPORTS
 Early Versions of the Standard Certificates (cont.)
– Early birth certificate additions
• Items related to stillbirth added in 1930
• More detail on mother’s residence added in 1939
• Certificate reformatted in 1949 to add section at bottom
labeled “For medical and health use only” containing
legitimacy, length of pregnancy and weight at birth
• In 1968 multiple items added to birth certificate
–
–
–
–
–
Education of mother and father
Dates of last normal menses, last live birth & last fetal death
Prenatal care
Complications of labor & complications related to pregnancy
Congenital malformations and birth injuries of child
• Apgar score & conditions affecting pregnancy added in 1978
Vital Statistics Registrar Ref Manual
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US STANDARD CERTIFICATES AND REPORTS
 Standard Certificate/Report of Fetal Death
– Became Separate Document in 1955
– Previously information gathered as part of birth
certificate (called Stillbirth)
– Closely followed birth certificate with addition of section
for cause of death
– Title changed to Report of Fetal Death in 1978
indicating it was a statistical report rather than a
permanent document
Vital Statistics Registrar Ref Manual
131
US STANDARD CERTIFICATES AND REPORTS
 Major Revision to Birth Certificate in 1989
– Hispanic identifier for the mother and father was added
– Medical information was restructured to use check
boxes rather than open-ended questions
• Simplify completion of forms
• Improve quality of reporting
• Obtain specific information on complications of labor and/or
delivery, obstetric procedures, method of delivery,
congenital anomalies and abnormal conditions of newborn
– Risk factors for the pregnancy added
• Maternal use of tobacco and alcohol
• Weight gain
– Form greatly increased in size to have space for check
boxes and new information
Vital Statistics Registrar Ref Manual
132
US STANDARD CERTIFICATES AND REPORTS
 Death Certificate Changes in 1989
– Hispanic identifier and education were added for the
decedent
– Form was enlarged to provide more space for cause of
death certification
– Detailed instructions for completion of selected items
was added to back of certificate
– Included example for proper completion of medical
certification in instructions
– A single combined certificate was designed for use by
physicians, coroners, and medical examiners (replaced
three alternative certificates introduced in 1968)
Vital Statistics Registrar Ref Manual
133
US STANDARD CERTIFICATES AND REPORTS
 Standard Certificates of Marriage and Divorce
– First recommended for implementation in 1955
– Revisions were relatively minor over the years
– 1989 versions of these certificates are currently in use
 Standard Report of Induced Termination of Pregnancy
– Included as a standard report in 1978
– Statistical report only with no identifying information on
woman having procedure
– In 1989 revision only minor changes
– In 1997 workgroup convened by Division of Reproductive
Health, National Center for Chronic Disease Prevention
and Health Promotion at CDC recommended a revised
form to the states
Vital Statistics Registrar Ref Manual
134
US STANDARD CERTIFICATES AND REPORTS
 2003 Revision of Standard Certificates
– Evaluation process for 2003
• Began with survey of state vital registration and statistics
executives to determine whether revisions were needed
• Consensus was birth and death certificates and fetal death
report should be revised
• Marriage and divorce certificates did not need revision
– NCHS assembled panel of experts to evaluate 1989
standard certificates and recommend revisions
• State vital registration and statistics executives
• Representative of data provider and user organizations
Vital Statistics Registrar Ref Manual
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US STANDARD CERTIFICATES AND REPORTS
 2003 Revision of Standard Certificates (cont.)
– Format of panel
• “Parent group" that oversaw the process
• Three subgroups that individually focused on content of
birth, death, and fetal death certificates
• A fourth subgroup for standards and design
– Focused on formatting all the certificates and worksheets
– Standardized record content to facilitate data comparability
and compatibility
– Made recommendations for implementation
Vital Statistics Registrar Ref Manual
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US STANDARD CERTIFICATES AND REPORTS
 2003 Revision of Standard Certificates (cont.)
– Three criteria guided the panel's decision in determining
whether to keep an existing item or add a new item
• Is the item needed for legal, research, statistical, or public
health programs?
• Is the item collectible with reasonable completeness and
accuracy?
• Is the vital statistics system the best source for this
information?
Vital Statistics Registrar Ref Manual
137
US STANDARD CERTIFICATES AND REPORTS
 2003 Standard Certificate of Live Birth
– Substantial changes particularly in medical portion
• Revisions to medical risk factors, obstetric procedures,
complications of labor and/or delivery, method of delivery,
abnormal conditions of the newborn, congenital anomalies
• Questions added about maternal morbidity, mother’s height
and weight, WIC participation, principle method of payment
for delivery, infections present, breast-feeding status
– Checkbox items were re-designed to elicit more specific
responses from data providers
– Specific items were added to certificate to address data
collection needs and to facilitate the linkage of data sets
Vital Statistics Registrar Ref Manual
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US STANDARD CERTIFICATES AND REPORTS
 2003 Standard Certificate of Live Birth (cont.)
– Reformatted to add section for “administrative use”
• Contains items needed for statutory mandates other than
those related to establishing permanent legal record such
as mother’s mailing address, marital status, SSN requested
for child, mother’s and father's SSNs, etc.
– Other areas
• Separate standardized worksheets were developed for the
mother and for facility staff
– Items to be completed by the mother were separated from
medical information completed by facility staff
– Worksheets included clear, unambiguous questions,
definitions, instructions, and preferred data sources
• The birth subgroup highly recommended testing the
certificate and worksheets before final release to the states
Vital Statistics Registrar Ref Manual
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US STANDARD CERTIFICATES AND REPORTS
 2003 Standard Report of Fetal Death
– Applicable changes from the birth certificate were
integrated into the fetal death report
– Changes to cause of fetal death section
• Changed to a checkbox format to improve quality of
reporting
• Revised and expanded to include additional medical items
about the fetus
– Worksheets about the patient and the delivery were
developed for completion by facility staff
– The fetal death subgroup also recommended that
worksheets be tested prior to implementation
Vital Statistics Registrar Ref Manual
140
US STANDARD CERTIFICATES AND REPORTS
 2003 Standard Certificate of Death
– Items were added to facilitate ICD-10 coding and to
improve the quality of cause of death data
• Did tobacco use contribute to death?
• More information on pregnancy status at death for females
• Decedent’s role if transportation accident
– To improve reporting on sensitive items such as
Occupation, business/industry, Hispanic origin, race and
education of decedent, a section was designated "for
statistical use only"
– Extensive instructions for the medical certifier were added
as a detachable page to the certificate
– Instructions for the funeral director were also added as a
separate page to the certificate
Vital Statistics Registrar Ref Manual
141
US STANDARD CERTIFICATES AND REPORTS
 Implementation of 2003 Standard Certificates
– 2003 standard birth certificate
• Extensive changes to the items and format
• Most states were using automated systems to collect birth
information from medical facilities
– 2003 changes meant major revisions were needed to
computer programs
– Many states already planned to move to an Internet-based
electronic birth record system for birth data
– Changing computer systems was extremely expensive and
many states did not have funds available
– NCHS was unable to provide any funding to assist in
implementing the new certificates
– Most states wanted to wait to implement 2003 format until
funds were available to reengineer entire birth system
Vital Statistics Registrar Ref Manual
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US STANDARD CERTIFICATES AND REPORTS
 Implementation of 2003 Standard Certificates (cont.)
– 2003 standard birth certificate (cont.)
• As states reengineered their computer programs for an
Internet-based electronic birth record system they used the
2003 birth certificate format
– The timing was different for each state
– Some states became “early adopters” of the 2003
certificate while others are still in the process of
implementing the 2003 version
– NCHS received different VSCP data sets from states
causing processing and analysis problems
Vital Statistics Registrar Ref Manual
143
US STANDARD CERTIFICATES AND REPORTS
 Implementation of 2003 Standard Certificates (cont.)
– 2003 standard death certificate
• Same problems with implementation applied to 2003 death
certificate
• Many states were developing Internet-based electronic death
registration systems and decided to implement 2003 revision
during this development
• Again, NCHS did not have funding to support implementation
• Some funding was available from the Social Security
Administration because they wanted to improve timeliness of
reporting the fact of death
• As with births, states are at different stages in the
implementation process for the 2003 death format with some
states yet to implement
Vital Statistics Registrar Ref Manual
144
US STANDARD CERTIFICATES AND REPORTS
 Implementation of 2003 Standard Certificates (cont.)
– Problems with use of different versions
• Different timing for state implementation meant different
formats in states
• NCHS had to handle two different formats for each certificate
• Items on certificates were not always comparable from each
revision
• Data on new items was not available from all states for
statistical analysis
– To meet VSCP contract requirements, all states will be
required to use 2003 standard certificate items formats
beginning with 2014 data
Vital Statistics Registrar Ref Manual
145
Section 9
Resources for 2003 Standard
Certificates
Vital Statistics Registrar Ref Manual
146
RESOURCES FOR 2003 STANDARD CERTIFICATES
 Worksheets for 2003 Standard Birth Certificate and
Fetal Death Report
– Recommended by panel reviewing the standard certificates for
2003
– Improve data quality and obtain more consistent information
– Contain detailed instructions for completion of items
– Indicate preferred data sources
– Review panel suggested that states consider integrating fetal
death reporting into their electronic birth registration system for
ease of data entry by facility staff
Vital Statistics Registrar Ref Manual
147
RESOURCES FOR 2003 STANDARD CERTIFICATES
 Worksheets for 2003 Standard Birth Certificate and Fetal
Death Report (cont.)
– Four standard worksheets
• Mother's Worksheet for Child's Birth Certificate
– Designed with questions to be completed by mother
– Obtains legal and administrative information on mother and
father
– Also asks mothers height, weight, smoking, WIC participation
– All medical information collected on facility worksheet
• Facility Worksheet for Live Birth Certificate
– Intended to be completed by facility staff
– Information should be obtained from prenatal care records,
mother's medical records, and labor and delivery records
– Worksheet contains definitions and suggested sources for
obtaining the information
Vital Statistics Registrar Ref Manual
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RESOURCES FOR 2003 STANDARD CERTIFICATES
 Worksheets for 2003 Standard Birth Certificate and Fetal
Death Report (cont.)
– Four standard worksheets (cont.)
• Patient's Worksheet for the Report of Fetal Death
– Designed to be completed by patient or for someone in the
facility to use in interviewing the patient
– Similar to mother’s worksheet for birth but has slight rewording
• Facility Worksheet for the Report of Fetal Death
– Similar to facility worksheet for live birth
– Additional questions on cause of fetal death
Vital Statistics Registrar Ref Manual
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RESOURCES FOR 2003 STANDARD CERTIFICATES
 Worksheets for 2003 Standard Birth Certificate and Fetal
Death Report (cont.)
– Guide to Completing Facility Worksheet for the Certificate
of Live Birth and Report of Fetal Death
• Very detailed document developed to assist facility staff in
completing the worksheets
• Goes item by item in the order they appear on the worksheet
– Definitions
– Specific instructions for completing each item
– Identifies source in medical record where information for each
item may be found
– Identifies alternative or synonymous terms and common
abbreviations for the item
Vital Statistics Registrar Ref Manual
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RESOURCES FOR 2003 STANDARD CERTIFICATES
 Standard Specifications for Collecting and Editing Birth
and Death Certificates
– Background
• In the late 1980s and early 1990s many states were beginning
to automate collection of vital record information
• By 2000 approximately 95% of births were registered
electronically
• Systems were developed in a piecemeal fashion in an era of
constantly changing technology
• States often depended on vendors who had limited
specifications for their software
• Significant data quality issues began to appear
Vital Statistics Registrar Ref Manual
151
RESOURCES FOR 2003 STANDARD CERTIFICATES
 Standard Specifications for Collecting and Editing Birth
and Death Certificates (cont.)
– Panel reviewing standard certificates for 2003
recommended that NCHS develop and promulgate
standards for vital statistics data collection and processing
• Improve data quality and eliminate some of the problems in
previous systems
• Ensure uniformity in national data collection
• Promote standardization and comparability among states
• Consistent set of software specifications for use by all vendors
and state offices
Vital Statistics Registrar Ref Manual
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RESOURCES FOR 2003 STANDARD CERTIFICATES
 Standard Specifications for Collecting and Editing Birth
and Death Certificates (cont.)
– Specifications included comprehensive set of instructions
covering all aspects of the electronic system
• Mechanisms for incorporating recommended worksheets into
the system
• Item specific edit criteria
• Computational algorithms
• Item code specifications
• Response categories, including drop-down menus and “pick
lists"
• Requirement for context specific help
• Electronic transmission standards
Vital Statistics Registrar Ref Manual
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RESOURCES FOR 2003 STANDARD CERTIFICATES
 Standard Specifications for Collecting and Editing Birth
and Death Certificates (cont.)
– Specific features recommended for inclusion in electronic
software systems
• Automatic edits at the time of data entry - allows users to
immediately modify data
• Ability to edit related items together - indicates problems with
related items that are inconsistent
• On-screen messages - item specific reminders/instructions
• Online help - obtain more detailed instructions and definitions
• Item order workflow - software entry should flow in same order
as worksheets
Vital Statistics Registrar Ref Manual
154
RESOURCES FOR 2003 STANDARD CERTIFICATES
 Standard Specifications for Collecting and Editing Birth
and Death Certificates (cont.)
– Specific features recommended for inclusion in electronic
software systems (cont.)
• Final review/query screen - allows user to temporarily skip
items to gather information, and final screen reminds user to
enter all missing information before records can be registered
• List of pending items - allows user to easily access a list of
incomplete items
• Version control - changes in software versions should be
tracked
Vital Statistics Registrar Ref Manual
155
RESOURCES FOR 2003 STANDARD CERTIFICATES
 Standard Specifications for Collecting and Editing Birth
and Death Certificates (cont.)
– Additional information
• Specifications were designed to be used with different types of
electronic systems
• Specifications follow as closely as possible data standards
promulgated by CDC
• Software meeting specifications should reduce the need for
querying from states to providers and from NCHS to states
• Prior to state implementation, NCHS evaluates a state's
software to ensure it functions as intended and meets
specifications
Vital Statistics Registrar Ref Manual
156
RESOURCES FOR 2003 STANDARD CERTIFICATES
 Handbooks for 2003 Standard Death Certificate
– Handbooks developed by NCHS
• Previous versions updated for 2003 standard death certificate
• Follows items as numbered on US Standard Death Certificate
• Can be used as models for states to adapt for use in their own
area
– “Funeral Directors’ Handbook on Death Registration and
Fetal Death Reporting”
• General Information about death certificates and funeral
director responsibilities
• Item by item instructions
Vital Statistics Registrar Ref Manual
157
RESOURCES FOR 2003 STANDARD CERTIFICATES
 Handbooks for 2003 Standard Death Certificate
– “Physicians’ Handbook on Medical Certification of Death”
• Emphasis on medical certification of death
• Detailed examples on entering cause of death information
– “Medical Examiners’ and Coroners’ Handbook on Death
Registration and Fetal Death Reporting”
• General information about death certificates and medical
examiner or coroner responsibilities
• Emphasis on medical certification of death with detailed
examples
Vital Statistics Registrar Ref Manual
158
Section 10
Vital Record Topics
Vital Statistics Registrar Ref Manual
159
VITAL RECORD TOPICS
 Registration Issues
– Establish legal documents required by law
– Goal to register all vital events occurring in a state as
they occur
– Timeliness
• Vital events should be registered within time period specified
in law
• Use of Electronic Birth Registration (EBRs) and Electronic
Death Registration (EDRs) software has improved timeliness
in most states
• Some states still have problems meeting timeliness
requirements of VSCP and SSA contracts
Vital Statistics Registrar Ref Manual
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VITAL RECORD TOPICS
 Registration Issues (cont.)
– Timeliness (cont.)
• Improving timeliness
–
–
–
–
–
–
–
–
Consider eliminating requirements for paper records
Accept electronic records before paper records are received
Have electronic records filed directly with state office
Do not delay birth registration if paternity documents have not
been received within a short time (1-2 weeks) after birth
Conduct quality checks on statistical items after record has
been filed and sent to NCHS - send updated records later
Monitor infant deaths throughout year and follow-up on any
un-filed records
Allow death records to be filed with cause of death “Pending”
Give reports to hospitals and funeral directors showing how
they compare with similar providers in submitting records
Vital Statistics Registrar Ref Manual
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VITAL RECORD TOPICS
 Registration Issues (cont.)
– Quality
• Edits should be built into EBR and EDR programs for data
collection
• EBRs and EDRs should have extensive “help” incorporated into
the software
• Additional edits should be done at state office for consistency
or unusual trends
• Check for duplicate records
• Provide training to providers responsible for filing vital records
– Classes and one-on-one training as needed
– Detailed instruction manuals
– Add a “help line” for providers to call
Vital Statistics Registrar Ref Manual
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VITAL RECORD TOPICS
 Registration Issues (cont.)
– Quality (cont.)
• Follow-up with provider to resolve problems
• Monitor providers for high numbers of unknowns or other
problems and provide additional training
• Follow-up on all births with birth weight less than 750 grams to
determine if infant died and if so, that a death record was filed
• Query death records with incomplete cause of death
information
• Provide training to medical certifiers with high numbers of illdefined causes or incomplete entry of cause of death
information
Vital Statistics Registrar Ref Manual
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VITAL RECORD TOPICS
 Registration Issues (cont.)
– Field program
• Furnishes outreach and support to providers and others
involved in the vital statistics process
• Traditional field program
– Staff traveled around state to visit vital statistics providers and
local registrars
»
»
»
»
General contact to meet providers and local staff
Answer questions
Follow-up on problems with records
Conduct training as needed
– Full-time job of one or more staff members
– Expensive and time consuming
– Program varied from state to state as vital statistics funding
and staffing became problematic
Vital Statistics Registrar Ref Manual
164
VITAL RECORD TOPICS
 Registration Issues (cont.)
– Field program (cont.)
• Improvements in technology changed field program in many
states
–
–
–
–
–
Allow contact with providers to be made more efficiently
Follow-up with providers through phone calls, e-mail, and fax
Provide training material on Internet
Use social media to promulgate information
“Help” provided within electronic data collection software
• Examples of current staff field visits in many states
–
–
–
–
To conduct training classes for new software implementation
To specific providers for special training or to handle problems
To hospitals to conduct audits of data provided on birth records
To attend meetings of provider organizations
Vital Statistics Registrar Ref Manual
165
VITAL RECORD TOPICS
 Birth/Fetal Death Registration
– All live births should be registered
• Does not depend on gestational age
• Does not matter if infant alive or dead at time of registration
• If infant born alive then dies
– live birth should be registered
– death should be registered
– Fetal deaths should be registered as specified in state law
– Infant deaths should not be reported as fetal deaths
– For multiple pregnancies
• Each member born alive is registered separately as a live birth
• Members not born alive are registered as fetal deaths
Vital Statistics Registrar Ref Manual
166
VITAL RECORD TOPICS
 Out of Hospital Births
– Should be reported by
• Medical facility where mother & child were examined within five
days of birth
• Physician or other licensed health provider who examined
mother & child within five days of birth
• Mother or father
– Evidence required if birth registered within one year of birth
• Evidence of pregnancy
– Prenatal record
– Statement from physician or health provider
– Home visit by public health nurse or other health care provider
• Evidence infant was born alive
– Statement from healthcare provider who saw or examined infant
– Observation of infant by public health nurse
Vital Statistics Registrar Ref Manual
167
VITAL RECORD TOPICS
 Out of Hospital Births (cont.)
– Evidence required (cont.)
• Evidence of mother's presence in state on date of birth
– If birth occurred at mother's residence
» Rent receipt or utility bill with mother's name and address
» State issued license with mother's current residence
– If birth occurred outside of mother's place of residence and
mother is a resident of state
» Affidavit from tenant of premises where birth occurred stating
mother was present on those premises at time of birth
» Evidence of affiant's residence
» Evidence of mother's residence in state
– If mother not a resident of state, evidence that mother was in
state at time of birth must be clear and convincing to state
registrar
Vital Statistics Registrar Ref Manual
168
VITAL RECORD TOPICS
 Delayed Births
– Registered after time period specified in law
• Births registered within one year of birth but after time period
specified in law
– Are considered delayed but not marked as delayed
– Registered in standard format
• Births registered more than one year after date of birth
– Generally in special format
– Marked delayed
– Delayed registration of birth form should contain a
description of each document submitted to support facts
– Date of registration should be shown on certifications
issued for a delayed birth along with a description of
evidence used to file the record
Vital Statistics Registrar Ref Manual
169
VITAL RECORD TOPICS
 Delayed Births (cont.)
– Model law recommends all delayed records be filed at
state office
– Delayed reports of birth are not registered for deceased
individuals
– Documentary evidence is required to establish the
following
•
•
•
•
Full name of person at the time of live birth
Date of live birth
Place of live birth
Full name of mother prior to first marriage
Vital Statistics Registrar Ref Manual
170
VITAL RECORD TOPICS
 Delayed Births (cont.)
– Documentary evidence
• Must have been created at least one year prior to application
for delayed birth
• Must be from independent sources and in form of an original or
duly certified copy of document
• Generally at least three pieces are required
• Evidence may vary for persons born before 1965 and those
born on or after 1965
– Individuals not having sufficient documentary evidence are
directed to seek a court order establishing the facts of birth
– See Model Law and Regulations and NAPHSIS security
guidelines for additional details on requirements
Vital Statistics Registrar Ref Manual
171
VITAL RECORD TOPICS
 Amendments
– Usually a change to a certification item after a certification
of record has been issued
• Provided for in state law and regulations
• Documentary evidence needed for most amendments
– Support alleged facts
– Some corrections may require court determinations of facts
– Procedure for amending record
• Depends on type of record, error made, age of record
• Notation should be kept with record showing documentary
evidence used
• Date amendment made and clerk making amendment should
be noted
• Original information should be preserved for audit purposes
Vital Statistics Registrar Ref Manual
172
VITAL RECORD TOPICS
 Amendments (cont.)
– Certification of amended record
•
•
•
•
Should note that record was amended
Should show item amended
Should show date amendment was made
May show original information in some cases
– Special circumstances
• Names on birth records may be amended in many states as
follows
– If a person obtains a legal name change through a court
action, new name may be shown on birth record
– Parents may request changes to the first and middle names of
a child until the child's first birthday
Vital Statistics Registrar Ref Manual
173
VITAL RECORD TOPICS
 Amendments (cont.)
– Special circumstances (cont.)
• Delayed records of birth may not be amended
– Documentary evidence was used to place the record on file
– Exception for certain legal actions
• Medical certification of cause of death
– Amended only upon request of the medical certifier who
originally certified cause of death
– Exceptions may be made in the absence of that certifier
• Marital status on death records may require court determination
depending on information originally shown on the record
– If applicant has insufficient documentation to make
requested amendment, applicant may appeal to a court of
competent jurisdiction
Vital Statistics Registrar Ref Manual
174
VITAL RECORD TOPICS
 Amendments (cont.)
– Correction to records
• Change to a non-certification item or in some cases to a
certification item if no certifications have been issued
• Record not marked amended
• Used for
– Minor errors
– Typographical errors
– Administrative errors
– Obvious clerical errors
• Made at discretion of state registrar
• May not need documentation
• Should be noted on the record in such a way as not to be
shown in the certification
Vital Statistics Registrar Ref Manual
175
VITAL RECORD TOPICS
 Replacement Birth Record after Adoption
– Reports of adoption are received from courts
• If person born in state, a replacement birth record is prepared
containing information in court report of adoption
– Court must provide sufficient information to identify birth record
of adopted child
– Replacement record of birth substituted for original record of
birth
– Original record of birth and documents submitted are placed
under seal
– Court may request that no replacement birth record be
prepared
– If adoption annulled by court, original record of birth is restored
• If person born in another state, adoption report is forwarded to
state of birth
Vital Statistics Registrar Ref Manual
176
VITAL RECORD TOPICS
 Replacement Birth Record after Adoption (cont.)
– Foreign born children adopted in state
• Child not citizen of US at time of birth
– Most states have provisions in their law for creating some type
of birth document
– Court order should show actual date and place (country) of
child's birth
– Birth document prepared by state
» Should show country of child's birth
» Should contain a statement indicating “Record of Foreign Live Birth"
• Child is citizen of US at time of birth
– Consular Report of Birth may be obtained from US Department
of State
Vital Statistics Registrar Ref Manual
177
VITAL RECORD TOPICS
 Replacement Birth Record after Parentage Determination
– Replacement record of birth may be prepared in same
manner as adoption
– Method for determining parentage
• Court determination of parentage
• Establishment of parentage
– Parents marry after birth of child
» Sworn acknowledgment of paternity signed by both parents
» Certification of parent’s marriage record
– Unmarried parents
» Acknowledgment of paternity signed by both biological parents
» Written request signed by both parents to change child’s surname
– If another man is shown as father of child on original record,
court determination of paternity is needed prior to preparation
of replacement birth record
Vital Statistics Registrar Ref Manual
178
VITAL RECORD TOPICS
 Linking Birth and Death Records
– Necessary to prevent fraudulent use of birth records
– Match death records to live birth records
• In state deaths
• Out-of-state deaths received through IJE
• Military deaths and deaths in foreign countries
– Mark birth record as deceased
– Document date of death and state or country of death with
birth record
– Certifications of birth records marked deceased should be
similarly marked
Vital Statistics Registrar Ref Manual
179
VITAL RECORD TOPICS
 Confidentiality of Vital Records Information
– Necessary to
• Protect individual privacy
• Safeguard personal and medical information of individuals
• Prevent fraud and identity theft
– Should be specified in vital records law and regulations
• Data or information contained in vital records should not be
disclosed except as specified in law
• Vital records should not be available for public inspection
• Only authorized individuals should be able to obtain
certifications or information from vital records
Vital Statistics Registrar Ref Manual
180
VITAL RECORD TOPICS
 Confidentiality of Vital Records Information (cont.)
– Care should be taken to prevent inadvertent release of
personally identifiable information
• Information that can be used to distinguish or trace an
individual’s identity
• Includes names, Social Security numbers, address
• When linked to other personal or identifying information, such
things as date and place of birth, medical information, facility
where event occurred, etc. may be used to identify individuals
– Disclosure of identifiable information for health and
scientific research purposes
• Personally identifiable information may generally be disclosed
• Researcher must submit a written request
• State registrar must approve request
Vital Statistics Registrar Ref Manual
181
VITAL RECORD TOPICS
 Confidentiality of Vital Records Information (cont.)
– Disclosure of identifiable information for health and
scientific research purposes (cont.)
• Researcher should sign written agreement that includes
–
–
–
–
–
–
Details specifying name, title and organization of researcher
Objectives and title of research study
Intended uses of information obtained
If study has institutional review board approval
If contact will be made to any study subjects or next of kin
Method for protecting the confidentiality and security of
information provided
– Provision for destruction of information at conclusion of study
– Timeframe for study
Vital Statistics Registrar Ref Manual
182
VITAL RECORD TOPICS
 Confidentiality of Vital Records Information (cont.)
– Disclosure of identifiable information for health and
scientific research purposes (cont.)
• Researcher should sign written agreement that includes (cont.)
– Names of persons on research team who will have access to
confidential information
– Plan for dissemination of study results
– Prohibition of re-release by researcher of any personally
identifiable information without explicit permission from state
registrar
– Acknowledgement by researcher that ownership of any vital
record information provided remains with state registrar
Vital Statistics Registrar Ref Manual
183
VITAL RECORD TOPICS
 Confidentiality of Vital Records Information (cont.)
– Disclosure of identifiable information to government
agencies in the conduct of their official duties
• Should have written agreement signed by agency official
• Agency should specify intended uses of information obtained
from vital records
• Confidentiality and security of information provided should be
protected by agency
• Agreement should prohibit re-release by of any personally
identifiable information other than that spelled out in agreement
or without explicit permission of the state registrar
• Agency should acknowledge that ownership of any vital record
information provided remains with state registrar
Vital Statistics Registrar Ref Manual
184
VITAL RECORD TOPICS
 Confidentiality of Vital Records Information (cont.)
– Programs/agencies commonly receiving files of identifiable
information
• For public health purposes
–
–
–
–
–
Immunization
Newborn screening
Newborn hearing
Cancer registries
Other disease or congenital anomalies registries
• For administrative purposes (may be required by law)
–
–
–
–
Voter registration
Medicaid
Motor vehicle licensing agency
Law enforcement
Vital Statistics Registrar Ref Manual
185
VITAL RECORD TOPICS
 Issuance of Certifications
– One of the main functions of vital statistics office
– Require application by qualified applicant
• Should be signed, have identity documentation, evidence of
eligibility
• Qualified applicants
– For birth records
»
»
»
»
»
»
Registrant
Registrant’s spouse (civil partner, domestic partner)
Registrant’s child
Registrant’s parent or legal guardian
Legal or authorized representative
Government agency in conduct of official duties
Vital Statistics Registrar Ref Manual
186
VITAL RECORD TOPICS
 Issuance of Certifications (cont.)
– Require application by qualified applicant (cont.)
• Qualified applicants (cont.)
– For death records
»
»
»
»
»
»
»
»
Decedent’s spouse (civil partner, domestic partner)
Decedent’s child
Next of kin
Decedent’s parent or legal guardian
Legal or authorized representative
Government agency in conduct of official duties
Funeral director named on death record for 12 months after death
Others who demonstrate that record is needed for determination
or protection of applicant's personal or property right
Vital Statistics Registrar Ref Manual
187
VITAL RECORD TOPICS
 Issuance of Certifications (cont.)
– Certification format
• Should be issued on security paper with appropriate features
(see information on NAPHSIS website)
• Notations on record such as “Deceased” or “Amended” should
be shown
• Information identified as being collected for health or medical
purposes should not be shown
• Should contain date of registration (previously called “date
filed”)
• Should contain date of issuance and statement of state registrar
• Request number or tracking number should be shown
• Issuing office (state or county/local) should be identified
Vital Statistics Registrar Ref Manual
188
VITAL RECORD TOPICS
 Issuance of Certifications (cont.)
– Preferably all certifications should be issued from
centralized database
• Remote sites should have access to centralized database with
appropriate security restrictions
• Information on applicants for certifications should be kept in a
centralized database for tracking requests and security reasons
• Centralized database should contain notation if there is an alert
on record - registrant deceased on birth, record used for fraud,
missing child, etc.
• Software should have fee accounting functions with appropriate
controls for supervisory staff to monitor employee actions
• Automated reports with system activity and accounting data
should be produced daily, weekly, monthly, and annually
Vital Statistics Registrar Ref Manual
189
VITAL RECORD TOPICS
 Issuance of Certifications (cont.)
– Certifications issued from centralized database (cont.)
• Software should generate return information to customer
– For appropriate requests - certification along with information
letter and/or receipt
– For inappropriate requests - information letter on problem with
request or reason requester is not authorized to obtain record
• Software should route request to appropriate unit for action certification, amendment, delayed birth, adoption, or parentage
determination
• System should track number of copies issued and date issued
along with request or tracking number
• Database of request information should be maintained and
searchable for customer queries
Vital Statistics Registrar Ref Manual
190
VITAL RECORD TOPICS
 Issuance of Certifications (cont.)
– Certifications issued from centralized database (cont.)
• Automated systems should have appropriate security features
– System should be designed so electronic files cannot be
tampered with
– System should permanently record all changes made - who
what where when etc.
– Password, log on, biometric identifier, etc. should be required
for persons to enter system
– Authorization for employees to conduct functions in system
should be assigned by a supervisor
– System should be designed so that at least two people are
necessary to process a request for certification - for example
money handling separate from production of certification
– A log trail should exist for any actions taken against any record
in the system
Vital Statistics Registrar Ref Manual
191
VITAL RECORD TOPICS
 Issuance of Certifications (cont.)
– Certifications should be issued in a timely manner
• Performance standards recommend
– For walk-in requests, within 30 min.
– For mail requests, 0 to 3 days
– Problem requests should be responded to promptly
• Explain problem to applicant
• Provide information on way to fix problem
• Request should be tracked in system for future reference and/or
queries
Vital Statistics Registrar Ref Manual
192
Section 11
Statistical Data from
Vital Records
Vital Statistics Registrar Ref Manual
193
STATISTICAL DATA FROM VITAL RECORDS
 General Principles for Vital Statistics
– Complete, accurate, timely data from all vital events
– Must meet needs of statistical users
• Include sufficient detail
• Be relevant
– Data items must have clear, explicit definitions
• Follow national standards
• Be comparable over time and to other data systems
– Statistical methods should be documented and made
available to users
– Limitations of the data should be specified
Vital Statistics Registrar Ref Manual
194
STATISTICAL DATA FROM VITAL RECORDS
 General Principles for Vital Statistics (cont.)
– Classifications and groupings for tabulations should follow
recognized standards
– Tabulations should have continuity over time
– Data should be readily accessible
– Procedures should be in place to prevent inadvertent
release of personally identifiable information
– System must be able to adapt to new and changing
technology
Vital Statistics Registrar Ref Manual
195
STATISTICAL DATA FROM VITAL RECORDS
 Uses of Vital Statistics
–
–
–
–
–
–
–
–
–
Public health and epidemiologic monitoring
Study trends in mortality and natality
Investigate the prevalence and distribution of diseases
Identify populations at risk for certain medical problems and
diseases
Examine differences among population groups
Construct life tables
Establish baseline levels
Evaluate effectiveness of public health programs
Study maternal and child health and infant mortality
Vital Statistics Registrar Ref Manual
196
STATISTICAL DATA FROM VITAL RECORDS
 Uses of Vital Statistics (cont.)
–
–
–
–
–
–
–
–
–
Help identify local health problems and issues
Conduct demographic studies
Prepare population estimates and projections
Planning and allocation of resources by government
agencies
Consumer market research
Determining retail and service locations
Forecasting future trends
Planning for business growth
Studying economic and social conditions
Vital Statistics Registrar Ref Manual
197
STATISTICAL DATA FROM VITAL RECORDS
 Presentation of Vital Statistics Data
– Tabulations
• Display numerical data
• Allow users to make comparisons and note relationships
between data sets
• Degree of detail depends on purpose of table
– Standard groupings should be used for comparisons with
national and other states’ data
– Special groupings may be used to meet user needs or study a
particular problem
• Time period used should be specified
• Usually data are tabulated by place of residence, but place of
occurrence may be used for some purposes
Vital Statistics Registrar Ref Manual
198
STATISTICAL DATA FROM VITAL RECORDS
 Presentation of Vital Statistics Data (cont.)
– Charts, graphs and figures
• Allow users to more easily determine meaning of numbers
• Patterns of data stand out
• Used to show
– Distributions of data
– Patterns over time
– Relationships at a point in time
• Consider use of chart and level of user
– Statistical sophistication of user
– Complexity of data shown
Vital Statistics Registrar Ref Manual
199
STATISTICAL DATA FROM VITAL RECORDS
 Examples of Natality Statistics
– Tabulations showing
•
•
•
•
Live birth numbers and rates with time trends
Detail about mother - age, race or ethnicity, marital status
Detail about infant - sex, birth weight, congenital malformations
Pregnancy information - prenatal care, birth order, attendant at
birth, period of gestation, medical problems of mother
• Geographic information - appropriate small area information by
place of residence of mother
• Detail for teenage births - age, race or ethnicity, prenatal care,
birth weight, residence
Vital Statistics Registrar Ref Manual
200
STATISTICAL DATA FROM VITAL RECORDS
 Examples of Natality Statistics (cont.)
– Natality calculations such as
•
•
•
•
•
•
•
•
Crude birth rates by geographic region
Percent of births by age of mother
Age specific birth rates
Percent of births by birth weight
Percent of preterm births
Percent of births receiving prenatal care in the first trimester
Fertility rates
Adequacy of prenatal care
(For detail on calculations see NCHS publications and/or NAPHSIS
website)
Vital Statistics Registrar Ref Manual
201
STATISTICAL DATA FROM VITAL RECORDS
 Examples of Mortality Statistics
– Tabulations showing
• Death numbers and rates with time trends
• Demographic information about deceased - age, sex, race or
ethnicity, marital status
• Geographic information - appropriate small area information by
place of residence of deceased
• Cause of death information - detail on leading causes of death
by age, sex, and place of residence of deceased
• Detail on infant mortality, perinatal mortality, and maternal
mortality
Vital Statistics Registrar Ref Manual
202
STATISTICAL DATA FROM VITAL RECORDS
 Examples of Mortality Statistics (cont.)
– Mortality calculations such as
•
•
•
•
•
•
•
•
•
Crude death rate by geographic region
Percent of deaths by age of decedent
Age specific death rates
Age-adjusted death rates
Cause specific death rates
Infant mortality rates
Maternal mortality rates
Life expectancy at birth
Years of potential life lost
(For detail on calculations see NCHS publications and/or NAPHSIS
website)
Vital Statistics Registrar Ref Manual
203
STATISTICAL DATA FROM VITAL RECORDS
 Dissemination of Vital Statistics
– Should be timely
• Release as quickly as possible - don’t hold for printed material
• Use Internet - include as many publications as possible
– Should use multiple formats
• Annual reports
– Detail for reference
– Historical
• Preliminary data publications
• News releases
• Ad hoc tabulations
Vital Statistics Registrar Ref Manual
204
STATISTICAL DATA FROM VITAL RECORDS
 Dissemination of Vital Statistics (cont.)
– Should use multiple formats (cont.)
• Special summaries on particular topics
–
–
–
–
–
Maternal and child health
Infant deaths
Particular causes of death
Local area (county/city) data
Annual statistical highlights
• Public use data files - may not be feasible in small states
• Interactive web-based data query systems
– Allow users to create their own tables and graphs
– Should contain limited or grouped data to protect privacy
Vital Statistics Registrar Ref Manual
205
STATISTICAL DATA FROM VITAL RECORDS
 Dissemination of Vital Statistics (cont.)
– Include technical information
•
•
•
•
•
•
•
•
•
Methods of data collection
Definitions of items
Processing procedures
Data quality assessments
Limitations on data usage
Formulas used and other details for calculations
Imputation methods
ICD code groupings used
Population data for denominators
Vital Statistics Registrar Ref Manual
206
STATISTICAL DATA FROM VITAL RECORDS
 Special Use Files
– For statistical or health research
• May be provided if state does not produce public use files or
they do not meet needs of user
• Some states allow researchers to have access to files on
agency premises under staff supervision
• State statisticians may provide analytic consultation
– May produce tabulations or link files
– May co-author research papers
• May charge for creation of files or consultation
• Users must submit research request and sign confidentiality
agreement
Vital Statistics Registrar Ref Manual
207
STATISTICAL DATA FROM VITAL RECORDS
 Special Use Files (cont.)
– Linked files for statistical or health research
• Researchers must sign confidentiality agreement
– Should state that linked data will remain confidential
– Should place limitations on use of linked file
• Examples of linked files
– Deaths linked to births
» Infant death linked to birth
» Maternal death linked to birth or fetal death
– Births linked to Medicaid files
– Births linked to government social or benefit programs
» Births to WIC (Women, Infants, and Children) recipients
» Births to TANF (Temporary Assistance for Needy Families) recipients
– Deaths to Medicaid (or Medicare) files
– Deaths to census records
Vital Statistics Registrar Ref Manual
208
Section 12
Cause of Death
Tabulation
Vital Statistics Registrar Ref Manual
209
CAUSE OF DEATH TABULATION
 Collection of Cause of Death Information on Death
Certificates
– Medical Certification of Death form recommended by World
Health Organization (WHO)
– US has added additional fields
• To obtain more detailed information related to injuries
• To obtain more detail for coding cause of death
 Cause of Death Information Completed by Medical
Certifier
– Physician in attendance
– Coroner or medical examiner in some circumstances
Vital Statistics Registrar Ref Manual
210
CAUSE OF DEATH TABULATION
 All Causes of Death Should Be Entered on Medical
Certification
– WHO says causes to be entered are
"all those diseases, morbid conditions or injuries which either
resulted in or contributed to death and the circumstances of the
accident or violence which produced any such injuries"
– Underlying cause of death
• Defined by WHO as "(a) the disease or injury which initiated the
train of morbid events leading directly to death, or (b) the
circumstances of the accident or violence which produced the
fatal injury"
• Out of all causes listed on death certificate, the cause that
initiates the chain of events leading to death
• Used for tabulation purposes
• Most useful statistic for public health analysis
Vital Statistics Registrar Ref Manual
211
CAUSE OF DEATH TABULATION
 Defined Sequence for Entering Causes of Death
– Part I of form should contain
• Diseases in chain of events leading to death
• Condition leading directly to death on first line
• Each step in chain of events leading to direct cause of death on
following lines
• Underlying cause starting chain of events leading to death on
lowest line
• WHO definition indicates symptoms or modes of dying such as
respiratory arrest or heart failure should not be entered
– Part II of form should contain
• Other significant conditions contributing to death but not directly
related to the death
Vital Statistics Registrar Ref Manual
212
CAUSE OF DEATH TABULATION
 International Classification of Diseases (ICD)
–
–
–
–
Maintained by World Health Organization (WHO)
Used since late 19th century
Since 1999, Tenth Revision (ICD-10) used in US
Allows for comparisons of mortality data at various levels of
geography including international, state, and local
– Standards for classifying causes of death
•
•
•
•
Codes and subgroups of codes
Rules for applying codes and choosing underlying cause
Lists for tabulating mortality statistics
Standard definitions
Vital Statistics Registrar Ref Manual
213
CAUSE OF DEATH TABULATION
 ICD-10 Consists of Three Volumes
– Volume 1 contains the tabular list
• Alphanumeric list of codes with associated category titles for
diseases, injuries, external causes of injury, and factors related
to health status in 22 chapters
• ICD codes are three character categories (a letter and two
numbers) with four character subcategories (the three
characters followed by a decimal point and one number)
• Possible range of codes is A00.0 to Z99.9
• Much more detailed than previous versions of ICD - about 8000
categories
Vital Statistics Registrar Ref Manual
214
CAUSE OF DEATH TABULATION
 ICD-10 Consists of Three Volumes (cont.)
– Volume 2
• Contains background on the ICD
• Gives instructions on coding causes of death in selecting the
underlying cause
• Includes information on presentation of coded statistical data
and calculation of statistical indicators
– Volume 3
• Alphabetical index to classifications with their codes
Vital Statistics Registrar Ref Manual
215
CAUSE OF DEATH TABULATION
 Applying ICD Codes to Cause of Death
– Medical certifier should enter causes of death so that cause
on lowest line in part one is underlying cause of death for
statistical tabulations
– Medical certifier may not enter cause correctly
– Rules in ICD-10 Volume 2 used for selecting underlying
cause of death
• Applying rules requires extensive training
• Underlying cause should be determined by trained nosologist
– US uses computer programs to apply rules for choosing
underlying cause
• Computer assigns ICD codes to each cause of death entry and
applies rules to select underlying cause
• Computer program cannot always make selection
• Some cases rejected for coding by trained nosologist
Vital Statistics Registrar Ref Manual
216
CAUSE OF DEATH TABULATION
 Coding Underlying Cause of Death in US
– Originally, states had trained nosologists
– States sent coded data to NCHS
– NCHS developed Mortality Medical Data System (MMDS)
• Computer programs to automate entry and processing of cause
of death data
– SuperMICAR - allows literals to be entered
– MICAR - automates multiple cause coding rules and assigns
ICD codes to entries
– ACME - applies WHO rules for selecting underlying cause of
death
– TRANSAX - translates output from ACME into better form for
statistical tabulation
Vital Statistics Registrar Ref Manual
217
CAUSE OF DEATH TABULATION
 Coding Underlying Cause of Death in US (cont.)
– Mortality Medical Data System (MMDS) (cont.)
• Rejected records still had to be coded by nosologists in state
– NCHS began coding cause of death data for states without
nosologists
• States had difficulty maintaining trained staff
• Some states began sending files of literals to be coded by
NCHS
• NCHS processed the data files and returned coded data and
underlying cause codes back to the states
– In 2011 NCHS decided to code cause of death data for all
states
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CAUSE OF DEATH TABULATION
 Tabulation of Cause of Death Data
– Tabulation lists were developed by WHO for presenting
cause of death data
• Lists give standard groups of 3-digit ICD-10 codes for
presentation of underlying causes of death
– For example: Malignant neoplasms is C00-C97; Diabetes
mellitus is E10-E14; Accidents is V01-X59,Y85-Y86
– Standard groups of ICD codes are provided for general
mortality data and for infant and child mortality data
• US uses modified versions of lists developed by WHO
• Lists are used for tabulation and distribution of mortality
data by NCHS and states
• Use provides consistency and comparability of mortality
data between areas and over time
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CAUSE OF DEATH TABULATION
 Tabulation of Cause of Death Data (cont.)
– Leading causes of death
• Standard groups of ICD-10 codes from tabulation list are
ranked
• Specific list (113 Selected Causes of Death) used for
choosing leading causes in US
– Only certain groups from the list are eligible for ranking
– Ill-defined conditions and residual groups are not used
for ranking
• Groups with largest number of deaths are leading causes
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CAUSE OF DEATH TABULATION
 Comparing Cause of Death Over Time
– Deaths may be coded under different versions of the ICD
(for example, ICD-9 versus ICD-10)
• Coding rules and rules for selecting underlying cause of death
may change
• Trend discrepancies may be caused by different ICD versions
• Rankings of leading causes of death may also be affected
– Comparability studies
• NCHS determines differences in ICD versions
– A sample of death certificates are coded using both ICD
versions
– Underlying cause of death is determined using both versions
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CAUSE OF DEATH TABULATION
 Comparing Cause of Death Over Time (cont.)
– Comparability studies (cont.)
• Comparability ratio is developed
– Number of deaths classified by new ICD divided by number of
deaths classified by previous ICD
– Can be used to adjust causes of death classified under
previous ICD to be comparable to deaths classified under new
ICD
• From ICD-9 to ICD-10 some major changes to causes of death
such as
–
–
–
–
Septicemia
Influenza and pneumonia
Alzheimer’s disease
Nephritis, nephrotic syndrome and nephrosis
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