The National Longitudinal Mortality Study

2014 NAPHSIS Meeting
• Date of Meetings – June 8 - 11, 2014
• Presentation: Tuesday, June 10th
VITAL RECORDS: A culture of Quality
A Use of Linked Data in the
Study of US Mortality:
The National Longitudinal
Mortality Study
Norman J. Johnson
U.S. Census Bureau
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
•Overview of NLMS
•Study Design
•A Sampler of Study Findings
•Overview of NLMS
•Study Design
•A Sampler of Study Findings
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
Purpose of NLMS:
To study the relationship between
demographic and socioeconomic factors
differentials in U.S. mortality rates.
NLMS Sponsors and Funding Supporters
The National Heart, Lung, and Blood Institute
The National Cancer Institute
The National Institute on Aging
The National Center for Health Statistics
The Food and Drug Administration
The Office for Research on Women’s Health
The Office of Behavioral and Social Science Research
The National Institute on Minority Health and Health
The NCI Center to Reduce Cancer Health Disparities
Overview of NLMS
Study Design
A Sampler of Study Findings
NLMS Study Design
Cohort 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)
Current Population Survey:
National sample of households
Complex sample design
Samples of: Non-institutional U.S. population
Title 13, U.S. Code, confidentiality restrictions
60,000 - 80,000 households / month
Selected sub-populations over-sampled
(Hispanics, Blacks, Am Indians, small states)
Data collected on all persons in the household
(96% response rate)
NLMS – Cohort Selection Criteria
Those which had NDI linking variables:
Social Security Number,
Name(first and last),
Date of Birth (at least month & year)
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 carried
Other Variables
•March Income Supplement data &
Components of income
•Geographic variables
•Household composition
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.
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
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
Mortality Information on NLMS:
All information from Death Certificate
(age, sex, race, Hispanic, education,
Multiple Contributing Causes
Underlying Cause
(Cause of Death according to the
ICD, 9th & 10th Revisions)
Participation in CPS is VOLUNTARY
1. Permission is obtained to use the
information in Administrative Records
Studies before survey is administered
2. 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
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.
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.
Penalties for Violations of Confidentiality
If convicted:
1. Loss of job
2. Up to $500,000 fine
3. Up to 5 years in jail as a Federal offense.
Overview of NLMS
Study Design
A Sampler of Study Findings
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 ]
•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.
•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.
•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.
•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.
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.
Some Additional Research
1. The Dougy Foundation
2. Current Research on:
Amyotrophic Lateral Sclerosis
with Dr. Marc Weisskopf,
Harvard School of Public Health
Overview of NLMS
Study Design
A Sampler of Study Findings
HELP !!!
A. We just completed a match to the NDI
Dept. of Vital Records SUPPORT
C. Provide quick response to our request for
copies of Death Certificates.
D. We need lowest possible cost
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.
VITAL RECORDS: A culture of Quality
The NLMS Website: