An Overview and Update of the NAPHSIS Statistics Committee, 2006-2007

1. An Overview and Update of the NAPHSIS Statistics Committee, 2006-2007 NAPHSIS-NCHS Joint Annual Meeting Bruce B. Cohen, Ph.D. June 2007

2. Roles and ResponsibilitiesFrom: NAPHSIS Association Roles, Responsibilities and Operational Guidelines, April 2006

3. 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.

4. 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

5. 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.

6. Statistics Committee Structure • Committee as a whole • Five work groups

7. 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

8. 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.)

9. 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)

10. Work Group on Identifying Unreported Infant Deaths

11. 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

12. 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 (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

13. Workgroup on Life Expectancy

14. 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

15. Findings from the NAPHSIS survey regarding review of NCHS research data requests

16. 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.

17. 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

18. Birth and Death Data Release N=22

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

20. States that Require Their Own Review for Birth or Death Data • Arizona  • California  • Colorado  • Idaho  • Maine  • Massachusetts  • New Jersey  • Pennsylvania  • South Carolina  • Wisconsin

21. 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

22. States That Do Not Release Birth or Death Certificate # • Alabama  • Colorado  • Maine  • North Dakota  • South Carolina  • Wisconsin

23. 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

24. 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

25. 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

26. Summary of NAPHSIS-NCHS Reviews • 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

27. 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

28. 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

29. 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