An Overview and Update of the
NAPHSIS Statistics Committee,
2006-2007
NAPHSIS-NCHS Joint Annual Meeting
Bruce B. Cohen, Ph.D.
June 2007
Roles and Responsibilities
From: NAPHSIS Association Roles,
Responsibilities and Operational
Guidelines, April 2006
Roles and Responsibilities
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Is chaired by an individual appointed by
the President.
Receives staff support from Director of
Public Health and Informatics Projects.
Provides direction and statistical expertise
to the VSCP Cost Formula Committee on
contract issues pertaining to re-release of
jurisdictional data and data confidentiality.
Guides the initiatives in the CDC
Cooperative Agreement on State and Local
Data.
Roles and Responsibilities
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Reviews proposals submitted to NCHS by
government agencies and researchers for
release of jurisdictional data and provides
guidance to the membership on
responding to individual data requests.
Provides guidance to NAPHSIS
membership on data standards, data
confidentiality and data release.
Provides guidance in the development of
NAPHSIS-sponsored surveys.
Oversees the NAPHSIS Revised Birth
Certificate Data Analysis Project
Organizational Locus
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Is located within Technical Oversight
Group
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The Technical Oversight Group is
chaired by a Member-at-large
appointed by the President, receives
staff support from the Executive
Director and includes the chairs of the
Innovations, Inter-jurisdictional
Exchange, Security, Statistics, Training
and VSCP Cost Formula Committees.
Statistics Committee Structure
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Committee as a whole
Five work groups
Work groups
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Ongoing analysis of new & revised
variables on the birth certificate
Follow-up of extremely low birth weight
infants and impact on infant mortality
Race Classification Issues
Statistical standards/Confidentiality and
Data Release
Analysis of life expectancy with inclusion
of military deaths, perhaps focusing on
WW II deaths
Work Flow
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Monthly conference calls of entire
group
Work group conference calls
E-mail and telephone calls on
special issues and projects
Meeting in-person when possible
(national meetings, regional
NAPHSIS meetings, etc.)
Current Members
Jerry Orris (PA)
Isabelle Horon (MD)
Lou Saadi (KS)
Greg Crawford (KS)
Mark Flotow (Ill)
John Oswald (MN)
Glenn Copeland (MI)
Lois Haggard (UT)
Bruce Cohen (MA)
Lloyd Mueller (CT)
Meade Grigg (FL)
Gwen Doebbert (CA)
John Senner (AK)
Paul Buescher (NC)
Jay Buechner (RI)
Guang Zhao (SC)
Shae Sutton (SC)
Buddy Hudson (SC)
Jane Mckendry (CA)
Work Group on Identifying
Unreported Infant Deaths
Steps for Identifying Unreported Infant
Deaths
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Identify all infants with birth weights <750 gms
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Determine whether death certificate was filed
If not, follow up with hospital to determine infant status
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Follow up on infants with fatal diseases (e.g.,
anencephaly) to ensure death certificates were filed
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Match hospital discharge records with birth records to
identify unreported infant deaths
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Provide training and guidelines for hospital staff on how
to report vital events
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Flow chart is a useful tool
Review out of state data for potential problems; follow
up with other states as needed
Guidelines for Reporting Live Births, Infant Deaths,
Fetal Deaths, and Induced Terminations of Pregnancy
(i.e., breathe or show any other evidence of
life, such as beating of the heart, pulsation of
the umbilical cord or definite movement of
voluntary muscle, whether or not the umbilical
cord has been cut or the placenta is attached)
Did the infant/fetus
show signs of life
at time of delivery?
Yes
No
Induced
termination of
pregnancy?
Is the infant
still living?
Yes
Prepare and file
Certificate of Live Birth
No
Yes
Prepare and file
Certificate of Live Birth
and Certificate of Death
May prepare and file
Induced Termination
of Pregnancy Report
Yes
Prepare and file
Certificate of Fetal Death
(Purposeful interruption of an intrauterine
pregnancy with the intention other than to
produce a live born infant and which does not
result in a live birth. Excludes management
of prolonged retention of products of conception
following fetal death)
No
Was gestational age
20+ weeks?
No
Unknown
Will remains be
transported
for burial?
Was birth weight
500+ grams?
Yes
Prepare and file
abridged Certificate
of Fetal Death
No
No report
required
Yes
Prepare and file
Certificate
of Fetal Death
No
No report
required
Workgroup on Life
Expectancy
Life Expectancy Impact Due to Exclusion of Military Deaths
Project
- Initial study on the effect of overseas World War II deaths on U.S. life
expectancy
- literature is thin on the subject of military death impacts
- the perfect dissertation topic?
- affects, negatively, both numbers of deaths and population that
feed into impacted death rates
- Source located for the number of World War II deaths
- some modeling may be required for inputs into life tables
- Two aspects being consider: registration and mortality measure impacts
Findings from the NAPHSIS
survey regarding review of
NCHS research data requests
Background
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NAPHSIS Resolution established a
process for NAPHSIS review of
requests that NCHS receives to provide
birth and death data to government
agencies and researchers.
The goal of this process is to expedite
review for requests for access to state
data from researchers and reduce the
burden on states and researchers
while adhering to state laws for data
release.
Methods
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Internet based survey was sent to all
states covering the following topics:
 Allowing NAPHSIS to act on states
behalf in approving:
 the release of birth data
 death data
 birth certificate numbers
 death certificate numbers,
 Data items that are prohibited from
release due to laws, regulations or
other legal requirements
Number of States
Birth and Death Data Release
Birth Data
Death Data
10
9
8
7
6
N=22
5
4
3
2
1
0
Yes
Yes, but
approval sign
off by state is
required
No, proposals
need to be
reviewed by
state
Other
Organizations to Which the Birth and
Death Certificate Number can be Released
10
Number of States
9
Birth Cert #
Death Cert #
8
7
6
5
4
3
2
1
0
Govt
Researchers State Must
Never
Combination
Agencies Approved by Review
Release
NAPHSIS & Proposal Certificate #
NCHS
Other
States that Require Their Own
Review for Birth or Death Data
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Arizona
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Massachusetts
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California
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New Jersey
Colorado
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Pennsylvania
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South Carolina
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Wisconsin
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Idaho
Maine
States That Need to Review Release
of Birth or Death Certificate #
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California
District of
Columbia
Idaho
Iowa
Kansas
New Jersey
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North Carolina
Pennsylvania
South Carolina
South Dakota
Vermont
States That Do Not Release Birth
or Death Certificate #
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Alabama
Colorado
Maine
North Dakota
South Carolina
Wisconsin
Next Steps…
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Contact states that indicated their
willingness to allow NAPHSIS to serve
as reviewer to confirm in writing
This will reduce the burden on NCHS
for contacting ALL jurisdictions for
certain projects
Summary of NAPHSIS-NCHS Reviews
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Request for data from linked birth-infant death file:
Not reviewed—data not available
EPA: 4 studies using individual-level 2001-2006
demographic and medical mortality data with all counties
and exact dates of death identified. Data to be made
available to one EPA federal employee and three EPA
university grantees for the study of mortality risks
associated with ambient exposure to air pollution:
Approved
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Duke University Study of extreme aged project: to
obtain mortality data and certificate numbers for all
death certificates since 1960 of male decedents who
survived to age 105 or more and female decedents who
survived to age 108 or more to address the overall
question of why the U.S. may enjoy lower mortality for
the “oldest-old” than many other developed countries.
Also to explore the possibility of adding data to the
International Database on Longevity (IDL). Approved
Summary of NAPHSIS-NCHS Reviews
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SSA-NDI Project to assess the completeness and
accuracy of Social Security Numbers (SSNs) reported on
state death certificates and included in the National Death
Index (NDI) by matching selected certificates to death
records held by the SSA. Involves releasing selected NDI
records to SSA for matching selected certificates to death
records held by the SSA. NDI records with invalid, missing
or unverified SSNs. NDI records would be evaluated for
accuracy and completeness and wherever possible an alias
NDI record would containing the correct SSNs would be
created. NCHS proposes to include these alias records in
the NDI master file. Approved
University of Pennsylvania Project to conduct Motor
Vehicle Crash (MVC) research using the linked Fatality
Analysis Reporting System (FARS) and Multiple Cause of
Death (MCOD) files for 1987-2004 in the NCHS Research
Data Center (RDC). This is a request to extend approved
pediatric analyses to adults. Approved
Summary of NAPHSIS-NCHS Reviews
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National Longitudinal Mortality Study This is
a continuation project by NCHS to update its
evaluation of the quality of Hispanic origin, race,
and other mortality data. This has been done
by comparing self-reported Hispanic origin, race,
and other variables on the Current Population
Survey (CPS) with State-coded Hispanic origin,
race, and other variables on the death certificate
during 1986-1998 and will be updated for 19992002. Quantitative measures will be produced to
evaluate the comparisons at the national and
state level. These measures will be available to
the States. Approved
Other Potential Activities
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Promote the use and extension of
WDQS at the state level
Explore statistical issues such as
consistent models for trend analysis
and data linkage methodologies
Begin standards development work
Explore partnering with other entities
such as the March of Dimes on issues
of mutual research interest
Expanding our world view…
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If other NAPHSIS members are
interested in joining, please let us
know
If NAPHSIS members wish to
participate in specific work groups but
not join the Statistics Committee,
please let us know
If you have suggestions about other
persons/organizations that might be
interested in participating, let us know
Key Contacts for Statistics Committee
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Bruce Cohen, Chair
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Jan Markowitz, NAPHSIS staff
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bruce.cohen@state.ma.us
jmarkowitz@naphsis.org
Mark Flotow, Executive Committee
liaison
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mark.flotow@illinois.gov