Data Sets and Outcome Measures Principles of Epidemiology Lecture 2 Dona Schneider, PhD, MPH, FACE

Epidemiology (Schneider) Types of Data Used in Epidemiologic Studies Demographic data Vital statistics data Surveillance data Health status and behavioral data Socioeconomic data Utilization data

Epidemiology (Schneider) Demographic Data Used to determine the population-at-risk Primary source of demographic data is a census

Epidemiology (Schneider) 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

Epidemiology (Schneider) 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

Epidemiology (Schneider) 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. The U.S. Census

Epidemiology (Schneider) 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

Epidemiology (Schneider) 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)

Epidemiology (Schneider) 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

Epidemiology (Schneider) 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

Epidemiology (Schneider) 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

Epidemiology (Schneider) 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)

Epidemiology (Schneider) 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

Epidemiology (Schneider) 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

Epidemiology (Schneider) 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

Epidemiology (Schneider) 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 Race and Ethnicity in Public Health Surveillance (cont.)

White Black Black (of Negro decent)Negro or BlackBlack, African American, or Negro Quadroon 1 Quadroon Chinese Indian Indian (Amer.)American Indian or Alaska Native Japanese Filipino Asian Indian Korean HawaiianNative Hawaiian Vietnamese Guamanian or Chamorro Samoan Other Asian Other Pacific Islander OtherSome other race Race Categories in the Census Source: 200 Years of U.S. Census Taking: Population And Housing Questions 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.

Epidemiology (Schneider) 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 Revision of Statistical Policy Directive No. 15, Race and Ethnic Standards for Federal Statistics and Administrative Reporting Office of Management and Budget (OMB)

Epidemiology (Schneider) 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 OMB Race Categories

Epidemiology (Schneider) 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 OMB Race Categories (continued)

Epidemiology (Schneider) 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

Epidemiology (Schneider) 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

Epidemiology (Schneider) 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

Epidemiology (Schneider) 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

Epidemiology (Schneider) 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

Epidemiology (Schneider) Black, African American, or Negro Black or African American Other Pacific Islander Samoan Guamanian or Chamorro Other Asian Vietnamese Korean Asian Indian Filipino Japanese Some other race White Native Hawaiian Chinese American Indian or Alaska Native 2000 CENSUS N/A White Native Hawaiian or Other Pacific Islander Asian American Indian or Alaska Native OMB CATEGORIES Comparison of Race Categories

Epidemiology (Schneider) Not Spanish/Hispanic/LatinoNot Hispanic or Latino Other Spanish/Hispanic/Latino Cuban Puerto Rico Mexican, Mexican Amer., Chicano 2000 CENSUS 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”. OMB CATEGORIES Comparison of Race Categories

Epidemiology (Schneider) 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

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

Epidemiology (Schneider) Social and Business Statistics Consumer Price Index GNP Employment rates Welfare status Inflation rates School attendance records Manufacturing and industrial data

Epidemiology (Schneider) Dates of Events and Legislation Data Voting records of legislators on health-related issues Dates of health fairs or publicity campaigns

Epidemiology (Schneider) Health Resources Data Numbers of… Health professionals Hospital beds Outpatient facilities Long-term care facilities Hospice services

Epidemiology (Schneider) 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

Epidemiology (Schneider) Health Economics Data National Medical Care Expenditure Survey (NMCES) Medicaid and Medicare records Third party payment records

Epidemiology (Schneider) Other Types of Data (cont.) Clinical data Height Weight Blood pressure Presence of signs and/or symptoms Autopsy findings Laboratory data WBC Hematocrit Cholesterol Lead levels pH levels bacteriology reports