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2014 NAPHSIS Meeting

2014 NAPHSIS Meeting. Date of Meetings – June 8 - 11, 2014 Presentation: Tuesday, June 10th NAPHSIS: VITAL RECORDS: A culture of Quality. A Use of Linked Data in the Study of US Mortality: The National Longitudinal Mortality Study (NLMS). Norman J. Johnson U.S. Census Bureau.

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2014 NAPHSIS Meeting

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  1. 2014 NAPHSIS Meeting • Date of Meetings – June 8 - 11, 2014 • Presentation: Tuesday, June 10th NAPHSIS: VITAL RECORDS: A culture of Quality

  2. A Use of Linked Data in the Study of US Mortality:The National Longitudinal Mortality Study(NLMS) Norman J. Johnson U.S. Census Bureau

  3. National Longitudinal Mortality Study Norman Johnson, Principle Investigator Census Bureau Sean Coady, Steering Committee Co-Chair, Principle Investigator National Heart, Lung, and Blood Institute of the NIH Sean Altekruse, Steering Committee Co-Chair, Principle Investigator National Cancer Institute of the NIH

  4. Overview of NLMS • Study Design • A Sampler of Study Findings • Conclusion

  5. Overview of NLMS • Study Design • A Sampler of Study Findings • Conclusion

  6. NLMS in brief:U.S. Census Bureau- Current Population Surveys,- Annual Social and Economic Supplements & - A subset of1980 Census Data linked to - Mortality Outcomes derived from the National Death Index

  7. Purpose of NLMS:To study the relationship between demographic and socioeconomic factors and differentials in U.S. mortality rates.

  8. NLMS Sponsors and Funding SupportersSponsors:The National Heart, Lung, and Blood Institute The National Cancer InstituteThe National Institute on AgingThe National Center for Health Statistics The Food and Drug AdministrationFunders:The Office for Research on Women’s HealthThe Office of Behavioral and Social Science ResearchThe National Institute on Minority Health and Health DisparitiesThe NCI Center to Reduce Cancer Health Disparities

  9. Overview of NLMS Study Design A Sampler of Study Findings Conclusion

  10. NLMS Study DesignCohort Definition:39 Current Population Surveys (1973 – 2011) 1 1980 U.S. Census sub-sample(~3.8 million persons)Mortality Definition:Deaths occurring between1979-2011 as identified in the National Death Index(~575,000 deaths identified)

  11. Current Population Survey:National sample of householdsComplex sample designSamples of: Non-institutional U.S. populationTitle 13, U.S. Code, confidentiality restrictions60,000 - 80,000 households / monthSelected sub-populations over-sampled(Hispanics, Blacks, Am Indians, small states)Data collected on all persons in the household(96% response rate)

  12. NLMS – Cohort Selection CriteriaThose which had NDI linking variables:Social Security Number,Name(first and last),Date of Birth (at least month & year)

  13. Core CPS Variables for NLMS:Age, Sex, Race, Marital Status, Education, Income Hispanic Origin, Ethnicity(Some information on tobacco use)Extensive employment information:Occupation, Industry, Current Work Status, Insurance carriedNO DIRECT HEALTH INFORMATION

  14. Other Variables • Employment/Unemployment • March Income Supplement data & • Components of income • Geographic variables • Household composition

  15. NLMS Mortality Update:1. Step 1. Match NLMS records to the NDI (Intend to match every 2 years) NDI matching algorithm involves: SSN, Name, Date of Birth and variations of these (NYSIS name, YOB +-2)2. Step 2. NLMS scores the probability of a correct match (NLMS Bibliography Ref # 6). Uses 12 personal identifiers producing “true”, “questionable”, “false” matches.

  16. NLMS Mortality Update(cont.):Step 3. Manual Review of Questionables (~95% matches to the NDI are false positive matches) MR conducted at the NPC using NLMS developed process called, EASY(EASY allows direct comparison of Death Certificate to complete HH information)Step 4. Update files with mortality information

  17. Validation of Match Algorithm Applied to American Cancer Society Study [Calle, Terrell, Am J of Epi, 1994] 15,000 persons with known vital status With SSN - 97% of deaths identified W/O SSN - 87% of deaths identified

  18. Mortality Information on NLMS:All information from Death Certificate (age, sex, race, Hispanic, education, occupation)Multiple Contributing CausesUnderlying Cause(Cause of Death according to the ICD, 9th & 10th Revisions)

  19. Participation in CPS is VOLUNTARY1. Permission is obtained to use the information in Administrative Records Studies before survey is administered2. Households which refuse are not included in the NLMS.3. There is no follow-back to interviewees for any reason. 4. No NLMS information is shared with other Census areas or other Government agencies

  20. Confidentiality Practices of the NLMS 1. Title 13 U.S. Code - Regulates Census Activities, including concerns for privacy and confidentiality issues 2. NLMS Cohorts derived from CPS which is based on sampling from the 10-year Census frame, so NLMS work must abide by Title 13 controls concerning privacy and confidentiality of records.

  21. Confidentiality Practices of the NLMS 1. Take Title 13 Review Course every year 2. Sign a Title 13 Adherence Pledge twice a year 3. Password restricted access to computers 4. Restricted access to project files. 5. Analytical files contain no PII data 6. Output restricted to tabular and model parameter estimates, sparse cell restrictions. 7. No individual data is ever released.

  22. Penalties for Violations of Confidentiality If convicted: 1. Loss of job Up to $500,000 fine AND/OR 3. Up to 5 years in jail as a Federal offense.

  23. Overview of NLMS Study Design A Sampler of Study Findings Conclusions

  24. National Longitudinal Mortality Study • Summary of Major Findings • Methodological • Demographic factors • Socioeconomic factors • Health care factors • Analytical cautions • [See bibliography on Website] • [ Current bibliography list 86 articles published in public health and scientific journals ]

  25. METHODOLOGICAL PAPERS • Algorithm to predict whether a match to the • National Death index is correct (Ref # 6) • Journal of Chronic Diseases • Studies comparing demographic data on • the death certificate with CPS data. • NCHS research staff has published four • of the 86 journal articles to assess and • document the quality of the information • provided on the death certificate.

  26. DEMOGRAPHIC PAPERS • Mortality differentials by race/ethnicity • Black/White: Higher death rates in blacks (age <65) • is decreased, but remains after adjusting for income. • (Ref # 12). LANCET • Hispanic/Non-Hispanic: Hispanics show lower death • rates overall, and strongly lower for CVD. Rates even • lower after adjustment for SES. (Ref # 14) • Mortality differentials by marital status (Ref #48) • Married persons have lowest death rates. Mortality • following widowhood remains elevated for 5 years.

  27. SOCIOECONOMIC PAPERS • Backlund landmark paper on: Separation of income and education effects.(Ref#36) • Increased education and education are associated with reduced mortality at thresholds. For income, steepest decline for survival occur at lowest income.

  28. SOCIOECONOMIC PAPERS • Specific Occupations (Ref # 37) • After adjustment for age, race, income, education, • service workers have the highest mortality rates. • Specific occupations – food service workers have • highest mortality, lawyers and math/sci professionals • the lowest.

  29. HEALTH CARE PAPERS • Differential mortality by health insurance status • (Ref # 15) Archives of Internal Medicine • Working uninsured have mortality rates 1.2 to 1.3 • times higher than the working insured. • Highest mortality for those <65 for those in • Medicaid or Medicare. • Selection effects and health care access likely to • influence differentials in mortality.

  30. Some Additional Research 1. The Dougy Foundation Current Research on: Amyotrophic Lateral Sclerosis with Dr. Marc Weisskopf, Harvard School of Public Health

  31. Overview of NLMS Study Design A Sampler of Study Findings Conclusion:

  32. HELP!!! A. We just completed a match to the NDI B. WE ASK FOR: Dept. of Vital Records SUPPORT Provide quick response to our request for copies of Death Certificates. We need lowest possible cost

  33. HELP!!! 1. Is there a low cost option for bulk orders or for applications to research? We CAN provide HELP to reduce cost: 1. We can provide manpower 2. We can provide for pay for work outside hours or extra hours staff pay.

  34. NAPHSIS: VITAL RECORDS: A culture of Quality The NLMS Website: www.census.gov/nlms

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