Board of Scientific Counselors Program Review

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Creating a National Data Enclave System for
Health Data Resources
Peter S. Meyer Director, Research Data
Center September 14, 2009
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National Center for Health Statistics

• Mission and Mandate
• Programs
• Federal Statistical System
• Working with the RDC

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NCHS Mission

• To monitor the nations healthto collect,
  analyze and disseminate health data
• To provide statistical information that will
  guide actions and policies to improve the health
  of the American people.

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National Center for Health StatisticsMission

• To improve the effectiveness, efficiency, and
  quality of health services in the United States
• Extent and nature of illness and disability
• Life expectancy
• Disease incidence
• Infant and maternal morbidity and mortality
• Impact of illness and disability on the economy
  and other aspects of well-being
• Environmental, social, and other health hazards
• Determinants of health

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National Center for Health StatisticsMission

• Health resources Health professionals and
  services and facilities
• Utilization of health care Ambulatory and
  facility-based
• Health care costs and financing
• Family formation, growth and dissolution

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NCHS Legislation

• Public Health Service Act, 1956 (Sec. 306)
• NCHS statistics must be
• of high quality, timely, comprehensive as well
  as specific, standardized, and adequately
  analyzed and indexed, and NCHS shall publish,
  make available, and disseminate such statistics
  on as wide a basis as is practicable.

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Why cant I just have the data?

• NCHS data confidentiality rules prohibit the
  release of potentially identifiable data
• Standards of the Federal Statistical System
• Ethics
• Consent
• Laws and laws
• 250,000 and 5 years in prison

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NCHS Snapshot

• Born in 1956 with the National Health Survey Act
• Forerunner of todays
• National Health Interview Survey and
• The National Health and Nutrition Examination
  Survey
• 500 staff
• In Hyattsville, MD
• and Research Triangle Park, NC
• FY 09 Budget 119M 40M in Reimbursable
  agreements

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Our Scope
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NCHS Programs Data Systems

• Vital Statistics
• Health Status
• National Health Interview Survey
• National Health and Nutrition Examination Survey
• Health Care Survey
• National Survey on Family Growth
• State and Local Area Integrated Telephone Survey

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National Vital Statistics System

• Birth and death records
• State and territory records
• Information at the State and local level

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National Vital Statistics System

• Data and analyses
• Birth and death rates
• Life expectancy
• Births
• Nonmarital births
• Births to teens
• Prenatal care and birthweight
• Pregnancy outcomes
• Causes of death
• Infant mortality

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National Health and Nutrition Examination Survey
NHANES Mobile Exam Center
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National Health and Nutrition Examination Survey

• Data source
• Standardized physical examinations, laboratory
  tests, personal interviews with annual sample of
  5,000
• Data applications
• Disease or condition prevalence
• Risk factors
• Nutrition monitoring
• Anthropometry
• Growth and development
• Disease monitoring

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National Health Care Surveys

• Hospital Discharge Survey
• Ambulatory Care Survey
• Hospital Ambulatory Care Survey
• Home and Hospice Survey
• Survey on Ambulatory Surgery
• Residential Care Survey

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Coronary Artery Bypass Graft (CABG) and
Percutaneous Coronary Intervention (PCI),1980-2004
Rate per 10,000 population

PCI
CABG
Source National Hospital Discharge Survey
1980-2004.
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National Survey of Family Growth

• Data source and sample
• In-person interviews in the home
• Annual sample of 7,600 women and 5,000 men,
  representative of the civilian US population,
  ages 15-44
• Findings
• Reproductive health
• Fertility/infertility
• Contraception
• Pregnancy
• Sexual activity
• Family formation
• Marriage, divorce, cohabitation

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SLAITS The State and Local Area Integrated
Telephone Survey

• Random digit-dial telephone survey
• National, state and local data needs
• Uses sampling frame from the National
  Immunization Survey
• Designed to produce immunization coverage
  estimates for 50 states and 28 metropolitan areas

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National Immunization Survey
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What We Eat in America USDA/NCHS

• An Integrated Federal Food Survey
• What We Eat in America (WWEIA) is the dietary
  intake interview component of the National Health
  and Nutrition Examination Survey (NHANES)
• WWEIA is conducted as a partnership between the
  USDA and the DHHS

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RDC Proposals

• Full research proposal from analytic plan to
  examples of desired output, eg, table shells
• Proposals are review in the RDC, the program that
  produces the data, and the Confidentiality
  officer
• Provide specifications to the RDC staff for
  creating analytic files
• Files are only created by RDC staff

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Proposal Requirements

• Cover letter
• Project title
• Abstract (maximum 300 words summarizing project)
• Full contact information
• Institutional affiliation
• Mail address, phone, email
• Dates of proposed time at RDC Source of funding
  for proposed research

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Proposal Requirements

• Study background
• Key study questions or hypotheses
• Public health benefits
• Methods
• Analytic approach and statistical methods
• Statistical software requirements
• Description of intended output for nondisclosure
  review, e.g.
• Table shells
• Model equations
• Test statistics that researcher plans to remove
  from RDC

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Proposal Requirements

• Explanation of why restricted data are needed,
  e.g. describe why publicly available data are
  insufficient
• Summary of data requirements to be included in
  analytic file
• Identification of sample
• Identification of variables
• Description of additional data to be supplied by
  researcher to be merged with NCHS or other data
  source

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Proposal Requirements Appendices

• Current Curriculum Vitae or resume for each
  investigator
• Data dictionary complete listing of specific
  data requested and its source(s) and indicate if
  public use or restricted access variables
• specific files and years
• sample
• variables (dependent, independent,
  matching/merging)

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RDC Helpful Tips

• Be clear about research and data requirements
  (helps to determine feasibility of project)
• Clearly identify the sample to be included in the
  analytic file
• Provide data dictionaries for both
• Public use data
• Restricted data
• Provide examples of expected output

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• National Center for Health Statistics
• Research Data Center
• Proposal Checklist
• National Vital Statistics System
• National Health Interview Survey
• NHIS Analytic Considerations
• National Health and Nutrition Examination Survey
• Tutorial
• National Health Care Surveys
• Linked Data Files
• Peter S. Meyer, Director
• Research Data Center
• 301-458-4375
• pmeyer1_at_cdc.gov