Data Sets and Outcome Measures

1
Data Sets and Outcome Measures

• Principles of Epidemiology
• Lecture 2
• Dona Schneider, PhD, MPH, FACE

2
Types of Data Used in Epidemiologic Studies

• Demographic data
• Vital statistics data
• Surveillance data
• Health status and behavioral data
• Socioeconomic data
• Utilization data

3
Demographic Data

• Used to determine the population-at-risk
• Primary source of demographic data is a census

4
Census Data

• The United Nations recommends
• The entire census be conducted in a single day
• The census should be sponsored by a national
  government
• There should be periodicity in censuses

5
Census Data

• Censuses should use individual enumeration to
  count the population
• Early US censuses counted families, not
  individuals
• Counts of individuals began in 1850
• Censuses should count all individuals regardless
  of personal, professional or social
  characteristics
• Blacks were excluded from early US censuses

6
The U.S. Census

• Every 10 years the U.S. Census Bureau (Department
  of Commerce) gathers detailed population data.
• Mandated in the U.S. Constitution, Article 1,
  Section 2
• Census was designed to collect and tabulate
  population data for determining representation in
  the House of Representatives. All other uses of
  the census are secondary.

7
Census Data (cont.)

• The Bureau of the Census (Department of Commerce)
  gathers detailed information on social, economic
  and housing at the
• state, county, Metropolitan Statistical Area
  (MSA), city, census tract and block levels
• http//www.census.gov

8
Vital Statistics

• Maintained by National Center for Health
  Statistics in the Department of Health and Human
  Services through contracts of agreement with
  states
• Birth data (natality)
• Death data (mortality)
• Marriage data (no longer collected)
• Divorce data (no longer collected)

9
Vital Statistics Data (cont.)

• Collection of the data is the responsibility of
  the locality and the state
• All states have been reporting their vital
  statistics to the federal government since 1933
• http//www.cdc.gov/nchs/nvss.htm

10
Vital Statistics Data (cont.)

• NCHS recommends uniform vital statistics records
  but some states use modified forms to collect
  additional data fields
• NCHS collects, aggregates and publishes summary
  statistics from all states plus New York City,
  the District of Columbia, Puerto Rico, the US
  Virgin Islands and Guam

11
Vital Statistics Data (cont.)

• Birth Certification
• Automated collection of standard data set
  implementation January 1, 2002
• Most states now using electronic and paper birth
  certificates
• All states should be paperless within 10 years
• Soon, data collection will no longer be
  constrained by space

12
Vital Statistics Data (cont.)

• Death certification - EDC
• NCHS goal to improve data quality (to get at
  CAUSE)
• Cause may be underlying (one dimension) or
  multiple
• Must conform with WHO cause and OMB race and
  ethnicity categories
• Answer new questions/eliminate underreporting
• Did tobacco use contribute to death? (yes, no,
  probably, unknown)

13
Role of the World Health Organization

• Promotes standardization of mortality statistics
  through the International Classification of
  Diseases (ICD-10)
• Provides standard definitions
• Provides format for cause-of-death certification
• Describes how death certificates should be filled
  out
• Provides rules for selecting underlying cause of
  death
• Compiles international mortality statistics

14
Race and Ethnicity in Public Health Surveillance

• CDC/ATSDR Workshop, March 1993 Atlanta, GA
• Current concepts of race and ethnicity in public
  health surveillance lack clarity, precision and
  consensus
• Emphasis on race and ethnicity in public health
  surveillance diverts attention from underlying
  risk factors

15
Race and Ethnicity in Public Health Surveillance
(cont.)

• Use of race and ethnicity data in surveillance
  may reinforce stereotyping, mistrust and racism
• Different methods of data collection on race and
  ethnicity result in inconsistencies across data
  sources
• Race and ethnicity data may be inconsistent
  because of temporal variations in definitions and
  responses

16
Race and Ethnicity in Public Health Surveillance
(cont.)

• Current broad categories for data collection on
  race and ethnicity lack sensitivity to variations
  within groups that are defined in more subtle
  ways
• Public health surveillance race and ethnicity
  data are often not analyzed appropriately
• Public health surveillance data on race and
  ethnicity are often misinterpreted

17
Race Categories in the Census 1860-2000
1860 1870 1900 1970 20002
White White White White White
Black Black Black (of Negro decent) Negro or Black Black, African American, or Negro
Quadroon1 Quadroon
Chinese Chinese Chinese Chinese
Indian Indian Indian (Amer.) American Indian or Alaska Native
Japanese Japanese Japanese Japanese
Filipino Filipino
Asian Indian
Korean Korean
Hawaiian Native Hawaiian
Vietnamese
Guamanian or Chamorro
Samoan
Other Asian
Other Pacific Islander
Other Some other race
Source 200 Years of U.S. Census Taking
Population And Housing Questions 1790-1990. U.S.
Department of Commerce. U.S. Bureau of the
Census. 1 In 1890, mulatto was defined as a
person who was three-eighths to five-eighths
black. A quadroon was one-quarter black and an
octoroon one-eighth black. 2 Categories printed
in the 2000 Census Dress Rehearsal questionnaire.
18
Office of Management and Budget (OMB)
Revision of Statistical Policy Directive No. 15,
Race and Ethnic Standards for Federal Statistics
and Administrative Reporting

• Revised racial and ethnic standards (effective as
  of the 2000 decennial census) have 5 minimum
  categories for data on race and 2 for ethnicity
• Other Federal programs should adopt standards no
  later than January 1, 2003

19
OMB Race Categories

• American Indian or Alaska Native
• A person having origins in any of the original
  people of North and South America (including
  Central America) and who maintain tribal
  affiliation or community attachment
• Asian
• A person having origins in any of the original
  people of the Far East, Southeast Asia of the
  Indian subcontinent including for example,
  Cambodia, China, India, Japan, Korea, Malaysia,
  Pakistan, the Philippine Islands, Thailand and
  Vietnam

20
OMB Race Categories (continued)

• Black or African American
• A person having origins in any of the black
  racial groups of Africa. Terms such as Haitian
  or Negro can be used in addition to Black or
  African American
• Native Hawaiian or Other Pacific Islander
• A person having origins in any of the original
  peoples of Hawaii, Guam, Samoa or other Pacific
  Islands
• White
• Persons having origins in any of the original
  peoples of Europe, the Middle East or North Africa

21
Race and Ethnicity Categories (cont.)

• Ethnicity
• Hispanic or Latino
• A person of Cuban, Mexican, Puerto Rican, South
  or Central American or other Spanish culture or
  origin regardless of race
• The term Spanish origin can be used in addition
  to Hispanic or Latino
• Not Hispanic or Latino

22
Race and Ethnicity Categories (cont.)

• The standards provide two formats that may be
  used for data on race and ethnicity
• Self-reporting using two separate questions is
  the preferred method for collecting data on race
  and ethnicity
• In situations where self-reporting is not
  practicable or feasible, the combined format may
  be used

23
Race and Ethnicity Categories (cont.)

• Self-report method (two separate question format)
• The minimum designations are
• Race
• American Indian or Alaska Native
• Asian
• Black or African American
• Native Hawaiian or Other Pacific Islander
• White
• Ethnicity
• Hispanic or Latino
• Not Hispanic or Latino

24
Race and Ethnicity Categories (cont.)

• Non self-report method (combined question format)
• If a combined format is used, there are 6 minimum
  categories
• American Indian or Alaska Native
• Asian
• Black or African American
• Hispanic or Latino
• Native Hawaiian or Other Pacific Islander
• White

25
Race and Ethnicity Categories (cont.)

• In no case should the provisions of the standards
  be construed to limit the collection of data to
  these categories
• The collection of greater detail is encouraged

26
Comparison of Race Categories
2000 CENSUS
OMB CATEGORIES
American Indian or Alaska Native
American Indian or Alaska Native
Chinese
Asian
Japanese
Filipino
Asian Indian
Korean
Vietnamese
Other Asian
Black or African American
Black, African American, or Negro
Native Hawaiian
Native Hawaiian or Other Pacific Islander
Guamanian or Chamorro
Samoan
Other Pacific Islander
White
White
Some other race
N/A
27
Comparison of Race Categories
2000 CENSUS
OMB CATEGORIES
Mexican, Mexican Amer., Chicano
Hispanic or Latino A person of Cuban, Mexican,
Puerto Rican, South or Central American or other
Spanish culture or origin regardless of race.
The term Spanish origin can be used in addition
to Hispanic or Latino.
Puerto Rico
Cuban
Other Spanish/Hispanic/Latino
Not Spanish/Hispanic/Latino
Not Hispanic or Latino
28
Health Status Data

• National Health and Nutrition Surveys (NHANES I,
  NHANES II, NHANES III, HHANES)
• Surveillance data (Morbidity and Mortality Weekly
  Report or MMWR)
• National Health Interview Survey (NHIS)
• US Immunization Survey
• Registry Data (cancer, lead, birth defects)
• Individual or aggregate patient records

29
Behavioral Risk Data

• Behavioral Risk Factor Survey (BRFS)
• Youth Risk Behavior Survey (YRBS)
• Patient interviews
• Alcohol, smoking, violence estimates

30
Social and Business Statistics

• Consumer Price Index
• GNP
• Employment rates
• Welfare status
• Inflation rates
• School attendance records
• Manufacturing and industrial data

31
Dates of Events and Legislation Data

• Voting records of legislators on health-related
  issues
• Dates of health fairs or publicity campaigns

32
Health Resources Data

• Numbers of
• Health professionals
• Hospital beds
• Outpatient facilities
• Long-term care facilities
• Hospice services

33
Utilization Data

• National Hospital Discharge Survey
• National Nursing Home Survey
• National Ambulatory Medical Care Survey
• Surveys of Mental Health Facilities
• WIC
• Medicaid and Medicare records
• Third party payment records
• Hospital/clinic/office records

34
Health Economics Data

• National Medical Care Expenditure Survey (NMCES)
• Medicaid and Medicare records
• Third party payment records

35
Other Types of Data (cont.)

• Laboratory data
• WBC
• Hematocrit
• Cholesterol
• Lead levels
• pH levels
• bacteriology reports

• Clinical data
• Height
• Weight
• Blood pressure
• Presence of signs and/or symptoms
• Autopsy findings