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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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An overview and update of the naphsis statistics committee 2006 2007

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 2006-2007From: NAPHSIS Association Roles, Responsibilities and Operational Guidelines, April 2006


Roles and responsibilities
Roles and Responsibilities 2006-2007

  • 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 responsibilities1
Roles and Responsibilities 2006-2007

  • 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
Organizational Locus 2006-2007

  • Is located within Technical Oversight Group

    • 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
Statistics Committee Structure 2006-2007

  • Committee as a whole

  • Five work groups


Work groups
Work groups 2006-2007

  • 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
Work Flow 2006-2007

  • 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
Current Members 2006-2007

Jerry Orris (PA) Meade Grigg (FL)

Isabelle Horon (MD) Gwen Doebbert (CA)

Lou Saadi (KS) John Senner (AK)

Greg Crawford (KS) Paul Buescher (NC)

Mark Flotow (Ill) Jay Buechner (RI)

John Oswald (MN) Guang Zhao (SC)

Glenn Copeland (MI) Shae Sutton (SC)

Lois Haggard (UT) Buddy Hudson (SC)

Bruce Cohen (MA) Jane Mckendry (CA)

Lloyd Mueller (CT)



Steps for identifying unreported infant deaths
Steps for Identifying Unreported Infant Deaths 2006-2007

  • Identify all infants with birth weights <750 gms

    • Determine whether death certificate was filed

    • If not, follow up with hospital to determine infant status

  • Follow up on infants with fatal diseases (e.g., anencephaly) to ensure death certificates were filed

  • Match hospital discharge records with birth records to identify unreported infant deaths

  • Provide training and guidelines for hospital staff on how to report vital events

    • 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, 2006-2007

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

(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)

Is the infant

still living?

Induced

termination of

pregnancy?

Yes

No

Yes

No

Prepare and file

Certificate of Live Birth

Prepare and file

Certificate of Live Birth

and Certificate of Death

May prepare and file

Induced Termination

of Pregnancy Report

Was gestational age

20+ weeks?

Yes

No

Unknown

Prepare and file

Certificate of Fetal Death

Will remains be

transported

for burial?

Was birth weight

500+ grams?

Yes

No

Yes

No

Prepare and file

abridged Certificate

of Fetal Death

No report

required

Prepare and file

Certificate

of Fetal Death

No report

required



Life Expectancy Impact Due to Exclusion of Military Deaths 2006-2007

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



Background
Background research data requests

  • 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
Methods research data requests

  • 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


Birth and death data release
Birth and Death Data Release research data requests

N=22



States that require their own review for birth or death data
States that Require Their Own Review for Birth or Death Data Number can be Released

  • Arizona 

  • California 

  • Colorado 

  • Idaho 

  • Maine 

  • Massachusetts 

  • New Jersey 

  • Pennsylvania 

  • South Carolina 

  • Wisconsin


States that need to review release of birth or death certificate
States That Need to Review Release of Birth or Death Certificate #

  • California 

  • District of Columbia 

  • Idaho 

  • Iowa 

  • Kansas 

  • New Jersey

  • North Carolina

  • Pennsylvania 

  • South Carolina 

  • South Dakota 

  • Vermont


States that do not release birth or death certificate
States That Do Not Release Birth or Death Certificate # Certificate #

  • Alabama 

  • Colorado 

  • Maine 

  • North Dakota 

  • South Carolina 

  • Wisconsin


Next steps
Next Steps… Certificate #

  • 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
Summary of NAPHSIS-NCHS Reviews Certificate #

  • 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

  • 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 reviews1
Summary of NAPHSIS-NCHS Reviews Certificate #

  • 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 reviews2
Summary of NAPHSIS-NCHS Reviews Certificate #

  • National Longitudinal Mortality StudyThis 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 1999-2002. 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
Other Potential Activities Certificate #

  • 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
Expanding our world view… Certificate #

  • 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
Key Contacts for Statistics Committee Certificate #


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