An Overview and Update of the NAPHSIS Statistics Committee,

2006-2007

NAPHSIS-NCHS Joint Annual MeetingBruce B. Cohen, Ph.D.

June 2007

Roles and ResponsibilitiesFrom: NAPHSIS Association Roles,

Responsibilities and Operational Guidelines, April 2006

Roles and Responsibilities

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

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

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

Committee as a whole Five work groups

Work groups

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

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) 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)

Work Group on Identifying Unreported Infant Deaths

Steps for Identifying Unreported Infant Deaths

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

Did the infant/fetus show signs of life

at time of delivery?

Guidelines for Reporting Live Births, Infant Deaths,Fetal Deaths, and Induced Terminations of Pregnancy

Is the infantstill living?

Prepare and fileCertificate of Live Birthand Certificate of Death

Prepare and fileCertificate of Live Birth

(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)

Yes

Yes

No

Induced termination of

pregnancy?

May prepare and fileInduced Termination of Pregnancy Report

Was gestational age20+ weeks?

Prepare and fileCertificate of Fetal Death

(Purposeful interruption of an intrauterine pregnancy with the intention other than to

produce a live born infant and which does notresult in a live birth. Excludes management

of prolonged retention of products of conceptionfollowing fetal death)

Will remains be transportedfor burial?

Prepare and file abridged Certificate

of Fetal Death

No report required

Yes

Was birth weight 500+ grams?

No Unknown

Prepare and file Certificate

of Fetal Death

No report required

Yes

Yes Yes

NoNo

No

No

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

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

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

0

1

2

3

4

5

6

7

8

9

10

Yes Yes, butapproval signoff by state is

required

No, proposalsneed to be

reviewed bystate

Other

Nu

mb

er

of

Sta

tes

Birth DataDeath Data

N=22

Organizations to Which the Birth and Death Certificate Number can be Released

0

1

2

3

4

5

6

7

8

9

10

GovtAgencies

ResearchersApproved byNAPHSIS &

NCHS

State MustReview

Proposal

NeverRelease

Certificate #

Combination Other

Nu

mb

er

of

Sta

tes

Birth Cert #

Death Cert #

States that Require Their Own Review for Birth or Death Data

Arizona 

California 

Colorado 

Idaho 

Maine 

Massachusetts 

New Jersey 

Pennsylvania 

South Carolina 

Wisconsin

California  District of

Columbia  Idaho  Iowa  Kansas  New Jersey 

States That Need to Review Release of Birth or Death Certificate #

North Carolina Pennsylvania  South Carolina  South Dakota  Vermont

States That Do Not Release Birth or Death Certificate #

Alabama  Colorado  Maine  North Dakota  South Carolina  Wisconsin

Next Steps…

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

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 Reviews

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

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 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

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…

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

Bruce Cohen, Chair bruce.cohen@state.ma.us

Jan Markowitz, NAPHSIS staff jmarkowitz@naphsis.org

Mark Flotow, Executive Committee liaison mark.flotow@illinois.gov