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 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. OMB CATEGORIES 2000CENSUS Comparison of Race 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 OMB CATEGORIES 2000CENSUS 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 Hispanic or Latino Not Spanish/Hispanic/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. 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 Other Types of Data (cont.)