data sets and outcome measures principles of epidemiology lecture 2 dona schneider, phd, mph, face

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


Demographic Data

Used to determine the population-at-risk

Primary source of demographic data is a census


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


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


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


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

http://www.census.gov/


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)


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

http://www.cdc.gov/nchs/nvss.htm


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


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


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)


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


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


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


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.)

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

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.


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)


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


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)


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



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


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


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



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


Black, African American, or NegroBlack or African American


Samoan

Guamanian or Chamorro

Other Asian

Vietnamese

Korean

Asian Indian

Filipino

Japanese

Some other race

White

Native Hawaiian

Chinese


2000 CENSUS

N/A

White

Native Hawaiian or


Asian


OMB CATEGORIES

Comparison of Race Categories


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


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


Behavioral Risk Data

Behavioral Risk Factor Survey (BRFS)

Youth Risk Behavior Survey (YRBS)

Patient interviews

Alcohol, smoking, violence estimates


Social and Business Statistics Consumer Price Index

GNP

Employment rates

Welfare status

Inflation rates

School attendance records

Manufacturing and industrial data


Dates of Events and Legislation Data

Voting records of legislators on health-related issues

Dates of health fairs or publicity campaigns


Health Resources Data

Numbers of…

Health professionals

Hospital beds

Outpatient facilities

Long-term care facilities

Hospice services


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


Health Economics Data

National Medical Care Expenditure Survey (NMCES)

Medicaid and Medicare records

Third party payment records


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

data sets and outcome measures principles of epidemiology lecture 2 dona schneider, phd, mph, face

Documents

data collection

data quality

data sets

divorce data

census slide

detailed population

tabulate population

additional data fields