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Eliminating Health Disparities: Measurement and Data Needs (2004)

Chapter: Appendix A Descriptions of National Health and Health Care Surveys

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Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Appendix A
Descriptions of National Health and Health Care Surveys

NATIONAL HOUSEHOLD SURVEYS ON HEALTH-RELATED TOPICS

Behavioral Risk Factor Surveillance System (BRFSS)

Agency:

National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention

Main Purpose of Data Collection:

To collect state-level data on actual risk behaviors, as opposed to attitudes or feelings. The data are used to track and reduce health risk behaviors and associated illnesses.

Periodicity of Data Collection:

Monthly since 1984

Type of Survey:

• Cross-sectional

• Telephone interview

Sample Size:

1,200-7,000 interviewed yearly in each state; 100-700 interviewed monthly in each state.

Racial and Ethnic Data Collected:

Race: American Indian/Alaska Native; Asian or Pacific Islander; Black;

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

White; Other; Refused Specification; Don’t Know/Not Sure

 

Ethnicity: Hispanic Origin; Not Hispanic Origin; Don’t Know; Refused Specification

SEP Data Collected:

Education, employment, income

Language and Acculturation Data Collected:

Not collected

Consumer Assessment of Health Plans Survey (CAHPS)

Agency:

Center for Beneficiary Choices, Centers for Medicare and Medicaid Services

Main Purpose of Data Collection:

To collect information on consumers’ assessments of health plans in order to provide other consumers with easily accessible and understandable data to compare alternative health care providers.

Periodicity of Data Collection:

1995, ongoing

Type of Survey:

• Cross-sectional

• Kit of survey and report tools provided to health care providers. Information gathered is then reported to consumers.

Sample Size:

2001:780,000 individuals completed the survey

Racial and Ethnic Data Collected:

Follows 1997 revised OMB standards

SEP Data Collected:

Highest grade level completed (these are core questions; other data may be collected specific to the type of services provided)

Language and Acculturation Data Collected:

The survey is offered in English and Spanish.

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Medical Expenditures Panel Survey (MEPS)

Agency:

Sponsoring organizations: Agency for Healthcare Research and Quality (AHRQ) and National Center for Health Statistics (NCHS)

Main Purpose of Data Collection:

To provide data about health care use and costs to improve economic projections. There are three main components—Household (HC), Insurance (IC), and Medical Provider (MPC); and one supplement—Nursing Home Component (NHC).

Periodicity of Data Collection:

Annual. HC and IC conducted from 1996-2000. NHC was a one-time survey in 1996. MPC is ongoing.

Type of Survey:

• Longitudinal: yearly sample followed for 2 years with five in-person interviews over the 2 years (approximately every 5-6 months).

• HC is conducted as a personal interview in respondents’ households. Both the IC and MPC consist of telephone interviews and mailed survey materials. The NHC was a year-long survey that consisted of inperson interviews with nursing ho me sources and telephone interviews with next of kin.

• MPC is not available for public use.

Sample Size:

HC: 1997:12,600 households, 34,000 individuals

1998:10,500 households,

23,000 individuals

IC: Each year approximately 36,900 establishments and individuals (7,000 establishments from HC, 27,000 establishments from the Census Bureau’s list of private-sector businesses, 1,900 government offices from Census list of government employers,

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

and 1,000 individuals from IRS list of self-employed)

 

MPC: Approximately 22,600 providers (2,700 hospitals, 12,400 office-based physicians, 7,000 separate-billing hospital physicians, 500 home health providers)

Racial and Ethnic Data Collected:

HC: Race: American Indian, Aleut; Asian; Black; White; Other Ethnicity: Hispanic or Not Hispanic

NHC: Race: American Indian or Alaska Native; Asian or Pacific Islander; Black; White; Other Ethnicity: Hispanic or Not Hispanic

IC: Not collected

MPC: Not collected

SEP Data Collected:

HC: education, employment, income/ poverty status, health care expenditures, and wealth (assets/debts)

NHC: income and insurance coverage

IC: Not collected

MPC: Not collected

Language and Acculturation Data Collected:

HC: Language of interview

IC, MPC, NHC: Not collected

Medicare Current Beneficiary Survey (MCBS)

Agency:

Office of Research, Development, and Information (ORDI), Centers for Medicare and Medicaid Services

Main Purpose of Data Collection:

To collect data on Medicare beneficiaries’ care received, cost of care, and source of payment to aid Health Care Financing Administration’s oversight of Medicare and Medicaid programs.

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Periodicity of Data Collection:

Annually since 1991

Type of Survey:

• Longitudinal. A rotating panel is interviewed three times a year. Can be used as a time series.

• In-person interview using CAPI

Sample Size:

Approximately 12,000 each year

Racial and Ethnic Data Collected:

Through 1997:

Race: White; Black; American Indian or Alaska Native; Asian or Pacific Islander; Other

Ethnicity: Hispanic or Not Hispanic

Beginning in 1998:

Race and Ethnicity: Follows 1997 revised OMB standards

SEP Data Collected:

Income, assets, family supports, quality of life, education

Language and Acculturation Data Collected:

Not collected

National Health and Nutrition Examination Survey (NHANES)

Agency:

National Center for Health Statistics, Centers for Disease Control and Prevention

NHANES I

 

Main Purpose of Data Collection:

To collect and disseminate health and nutrition information and statistics. Also to measure and monitor the nutritional status of adults and children.

Periodicity of Data Collection:

1971-1974 and 1974-1975

Type of Survey:

• Cross-sectional

• Interview and physical examination at mobile exam center (including vision and hearing, cardiovascular fitness and muscle strength, leg circu

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

lation and foot sensation tests; body fat, height, and weight measurements; dietary interview; body composition scan; dental check; and laboratory work)

Sample Size:

 

1971-1974

1974-1975

 

Sample Size

28,043

4,288

 

Interviewed

27,753

4,220

 

Examined

30,749

3,059

Racial and Ethnic Data Collected:

Race (1971-1974): White; Negro

Origin or Descent (1971-1974): German; Irish; Italian; French; Polish; Russian; English; Spanish; Mexican; Chinese; Japanese; American Indian; and Another group not listed

Race (1974-1975): White; Negro

Origin or Descent (1974-1975): German; Irish; Italian; French; Polish; Russian; English; Welsh; Mexican; Mexican-American; Chicano; Mexicano; Puerto Rican; Cuban; Central or South American; Other Spanish; Negro; Black

SEP Data Collected:

Income, education, poverty status, employment (industry)

Language and Acculturation Data Collected:

Language spoken at home

NHANES II

 

Main Purpose of Data Collection:

To continue data collection from NHANES I on health and nutritional status of the population.

Periodicity of Data Collection:

1976-1980

Type of Survey:

See NHANES I

Sample Size:

Sample 27,801

Interviewed 25,286

Examined20,322

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Racial and Ethnic Data Collected:

Race: White; Black; Other

Ethnicity: Countries of Central or South America; Chicano; Cuban; Mexican; Mexicano; Mexican American; Puerto Rican; Other Spanish; Other European (such as German, Irish, English, or French); Black/ Negro/African American; American Indian or Alaska Native; Asian or Pacific Islander (such as Chinese, Japanese, Korean, Filipino, Samoan); Other

SEP Data Collected:

Poverty status, income, education, employment (industry, occupation)

Language and Acculturation Data Collected:

Language spoken at home

NHANES III

 

Main Purpose of Data Collection:

To continue data collection from NHANES I and II on health and nutritional status of the population.

Periodicity of Data Collection:

1988-1994

Type of Survey:

• Cross-sectional

• Interview at respondent’s home (using pencil-and-paper interviewing [PAPI] during Phase I and computer-assisted personal interview [CAPI] during Phase II) and physical examination

Sample Size:

Phase I: 20,3000 (17,500 interviewed, 15,600 examined)

Phase II: 19,400 (16,500 interviewed, 15,200 examined)

Racial and Ethnic Data Collected:

Race: Aleut/Eskimo/American Indian; Asian or Pacific Islander; Black; White; Other

Ethnicity: Mexican/Mexican Ameri

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

can; Other Latin American or Other Spanish; Not of Hispanic Origin

SEP Data Collected:

Education, employment, income/ poverty status, health care expenditures

Language and Acculturation Data Collected:

Language spoken primarily at home, work, and school; language in which the interview was conducted (personal and examination); respondent, maternal, and paternal nativity

1999-Current NHANES

 

Main Purpose of Data Collection:

To continue data collection from NHANES I, II, and III on health and nutritional status of the population.

Periodicity of Data Collection:

1999-2003 (the latest release is 1999-2000 data)

Type of Survey:

Cross-sectional

Sample Size:

1999-2000 data release: 9,965 persons

Racial and Ethnic Data Collected:

Follows 1997 revised OMB standards

SEP Data Collected:

Education, employment (industry, occupation, job duties), income

Language and Acculturation Data Collected:

Respondent, paternal, and maternal nativity; language spoken mainly at home, as a child, and with friends; languages respondent can read and speak; language in which the respondent thinks

National Health Interview Survey (NHIS)

Agency:

National Center for Health Statistics, Centers for Disease Control and Prevention

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Main Purpose of Data Collection:

To provide national-level general health statistics to monitor the health status of the U.S. population.

Periodicity of Data Collection:

Continuously since 1957 (new samples are drawn on a weekly basis). The content of the survey has been updated every 10-15 years.

Type of survey:

• Cross-sectional

• Surveys conducted in respondents’ homes

Sample Size:

2002 Survey:

Family Core: 93,138 individuals Sample Adult Core: 31,044 individuals

Sample Child Core: 12,524 individuals Total:136,706

Racial and Ethnic Data Collected:

Race: For public use: 1997 revised OMB standards

Additional racial categories not available for public use: Native Hawaiian; Guamanian; Samoan; Other Pacific Islander; Asian Indian; Chinese; Filipino; Japanese; Korean; Vietnamese

Ethnicity: Hispanic, Central or South American; Other Latin American; Other Spanish; Hispanic/Latino/ Spanish type unknown; Not Hispanic/ Spanish origin

SEP Data Collected:

Employment, family income, education

Language and Acculturation Data Collected:

Place of birth, citizenship status

National Immunization Survey (NIS)

Agency:

National Center for Health Statistics, Centers for Disease Control and Prevention

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Main Purpose of Data Collection:

To provide vaccination data for public health partners.

Periodicity of Data Collection:

Quarterly, 1995-2001

Type of Survey:

• Cross-sectional

• Telephone survey; respondents’ immunization information verified by vaccination providers

Sample Size:

About 30,000 infants and children between the ages of 12 and 35 months

Racial and Ethnic Data Collected:

Race and ethnicity of mother and child collected:

Race: White; Black; American Indian; Asian; Other; Don’t Know; Refused Specification

Ethnicity: Not Spanish/Hispanic; Mexican; Mexican American; Chicano; Puerto Rican; Cuban; Other Spanish; Don’t Know; Refused Specification

SEP Data Collected:

Maternal education, poverty status, income

Language and Acculturation Data Collected:

Language of interview (English or Spanish)

National Longitudinal Study of Adolescent Health (AddHEALTH)

Agency:

Demographic and Behavioral Sciences Branch, National Institute for Child Health and Human Development, National Institutes of Health

Main Purpose of Data Collection:

To provide a comprehensive view of the health and health behaviors of adolescents and the antecedents—personal, interpersonal, familial, and environmental—of these outcomes.

Periodicity of Data Collection:

September 1994-December 1995;

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

April-August 1996; August 2001-April 2002

Type of Survey:

Longitudinal

Sample Size:

21,000 adolescents were included in the original sample; 15,000 young adults completed the most recent interview.

Racial and Ethnic Data Collected:

First question about race/ethnicity asks respondents if they are of Hispanic or Latino origin. The next question offers the following choices: white; black or African American; American Indian or Native American; Asian or Pacific Islander; other. Respondents are allowed to choose as many races as they wish.

SEP Data Collected:

In the second wave of interviews, respondents were asked how much they typically work and earn during the school year and over the summer.

Language and Acculturation Data Collected:

Duration of domicile in the United States is collected. The respondent is asked what language is usually spoken in the home. Responses include English, Spanish, Other (please record language), and don’t know. If respondents say they are Hispanic or Asian, they are asked to choose from a list of countries to clarify their background.

National Maternal and Infant Health Survey (NMIHS)

Agency:

National Center for Health Statistics, Centers for Disease Control and Prevention

Main Purpose of Data Collection:

To provide data to researchers on factors affecting adverse outcomes of pregnancy.

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Periodicity of Data Collection:

1988 with 1991 follow-up on the live births (closed)

Type of Survey:

• Cross-sectional

• Interviews with mothers, and vital records information obtained from hospitals

Sample Size:

9,935 live births, 3,309 fetal deaths, and 5,332 infant deaths

Racial and Ethnic Data Collected:

Race and ethnicity of mother and father:

Survey Data Collection:

Race: American Indian/Alaskan; Asian or Pacific Islander; Black; White

Ethnicity: Follows 1997 revised OMB standards

Vital Records Data:

Race: See above

Ethnicity: Non-Spanish; Puerto Rican; Cuban; Mexican; Central or South American; Other, unknown Spanish; Not classifiable

SEP Data Collected:

From survey data: Maternal/paternal education/vocational training, employment

Language and Acculturation Data Collected:

From vital records: Maternal nativity

National Mortality Followback Survey (NMFS)

Agency:

National Center for Health Statistics, Centers for Disease Control and Prevention

Main Purpose of Data Collection:

To provide data to analyze the causes of disease, and other issues related to health and mortality.

Periodicity of Data Collection:

Survey years: 1961, 1962-1963,

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

1964-1965, 1966-1968, 1986, 1993 (closed)

Type of Survey:

• Cross-sectional

• Collect data from death certificates and next-of-kin interviews

Sample Size:

1993:22,957 death certificates (including 9,636 death certificates selected with certainty)

Racial and Ethnic Data Collected:

Race: White; Black; American Indian; Eskimo; Aleut; Chinese; Filipino; Hawaiian; Korean; Vietnamese; Japanese; Asian Indian; Samoan; Guamanian; Other Asian/Pacific Islander; Other Race

Ethnicity: Puerto Rican; Cuban; Mexican/Mexicano; Mexican American; Chicano; Other Latin American; Other Spanish

SEP Data Collected:

Medical expenditures, education, employment, income and assets

Language and Acculturation Data Collected:

Country of origin

National Survey on Drug Use and Health (NSDUH)

Agency:

Office of Applied Studies, Substance Abuse and Mental Health Services Administration

Main Purpose of Data Collection:

To collect data for the study of patterns of substance use. It provides the primary data source of illegal drug use. Data are also collected on mental health and on tobacco and alcohol use and abuse.

Periodicity of Data Collection:

Annual since 1971

Type of Survey:

• Cross-sectional

• Interviewer-administered and self

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

administered using computer-assisted interviewing (CAI)

Sample Size:

Approximately 70,000 (12 years and older) surveyed each year. Sample size varies year to year.

Racial and Ethnic Data Collected:

Race: White; Black/African American; American Indian or Alaska Native; Asian or Pacific Islander; Other

Ethnicity: Hispanic or Spanish Origin or Descent; Not of Hispanic or Spanish Origin or Descent

SEP Data Collected:

Education, employment, family income

Language and Acculturation Data Collected:

Respondents are asked what country they were born in and how long they have lived in the United States.

National Survey of Family Growth (NSFG)

Agency:

National Center for Health Statistics, Centers for Disease Control and Prevention

Main Purpose of Data Collection:

To provide national data on the health of women and infants as well as on marriage, divorce, contraception, and infertility.

Periodicity of Data Collection:

Year (Cycle) 1973 (1), 1976 (2), 1988 (3), 1995 (4), 2002 (5), 2003 (6)

Type of Survey:

• Cross-sectional

• In person, at respondents’ homes. The first section is completed using CAPI (computer-assisted personal interviewing), and the last section is entered by the respondent using audio computer-assisted self-interviewing.

• Interview only women ages 15-44. Cycles 1 and 2 only include women

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

who had ever been married or had their own children living with them. Cycle 6 includes men.

Sample Size:

Cycle

Sample

 

1

9,797

 

2

8,611

 

3

7,969

 

4

8,450

 

5

10,847

 

6

Not available

Racial and Ethnic Data Collected:

Race/Ethnicity: American Indian/ Alaskan Native; Asian or Pacific Islander; Black not of Hispanic origin; White not of Hispanic origin; Hispanic

SEP Data Collected:

Education/vocational training, employment

Language and Acculturation Data Collected:

Not collected

Youth Risk Behavior Surveillance System (YRBSS)

Agency:

National Center for Chronic Disease Prevention and Health Promotion, Centers for Disease Control and Prevention

Main Purpose of Data Collection:

To provide data for the study of the prevalence of health risk behaviors of young people.

Periodicity of Data Collection:

Biennial since 1990

Type of survey:

• Cross-sectional

• The local school-based survey (of 9th through 12th grade students) is a self-administered questionnaire.

• In 1992 there was a household survey, and in 1995 there was a national college survey to supplement the school surveys.

Sample Size:

Surveys 9th-12th graders. The average

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

sample size for state and local surveys: 1,819 students. The national survey in 2001 had 13,000 usable questionnaires.

Racial and Ethnic Data Collected:

Follows 1997 revised OMB standards

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

HEALTH CARE ESTABLISHMENT-BASED SURVEY DATA COLLECTIONS

(in alphabetical order)

Healthcare Cost and Utilization Project (HCUP)

Agency:

Center for Organization and Delivery Studies, Agency for Healthcare Research and Quality

Main Purpose of Data Collection:

To bring together the data collection efforts of state data organizations, hospital associations, private data organizations, and the federal government to create a national information resource of health care data.

Periodicity of Data Collection:

Ongoing since 1988

How Data are Collected:

From various state databases

Unit of Analysis:

Hospital discharge

Sample Size:

HCUP databases include vast amounts of data. For example, one of the databases, the Nationwide Inpatient Sample, includes data on approximately 7 million hospital stays.

Racial and Ethnic Data Collected:

Because of differences in the coding of race and ethnicity across the state data systems that provide data to HCUP, the following racial and ethnic categories have been employed: (1) White, (2) Black, (3) Hispanic, (4)

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

Asian or Pacific Islander, (5) Native American, (6) Other. About half of the states supplying data for HCUP provide complete reporting of race/ ethnicity in their data.

SEP Data Collected:

Median income for Zip Code

Language and Acculturation Data Collected:

Not collected

National Ambulatory Medical Care Survey (NAMCS)

Agency:

National Center for Health Statistics, Centers for Disease Control and Prevention

Main Purpose of Data Collection:

To collect data on ambulatory care visits made to physician offices in the United States.

Periodicity of Data Collection:

Conducted annually 1973-1981, again in 1985, and annually since 1989

How Data are Collected:

A national sample of nonfederally employed, office-based physicians are each randomly assigned a one-week reporting period. During that week, data for a systematic random sample of visits are recorded by the physician or office staff.

Unit of Analysis:

Visit

Sample Size:

27,369 visits in the 2000 survey

Racial and Ethnic Data Collected:

Uses OMB standards, but does not collect more than one race. The physician or office staff answers the race/ethnicity question, so the response is based on the physician’s knowledge of the patient or on observation.

SEP Data Collected:

Not collected

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Language and Acculturation Data Collected:

Not collected

National Home and Hospice Care Survey (NHHCS)

Agency:

National Center for Health Statistics, Centers for Disease Control and Prevention

Main Purpose of Data Collection:

To collect data from home and hospice care agencies in the United States.

Periodicity of Data Collection:

1992, 1993, 1994, 1996, 1998, and 2000

How Data are Collected:

The survey uses a two-stage probability sampling design. In the first stage, a stratified sample of facilities was taken; facilities were stratified by type (home health agencies, hospices, and mixed agencies), Metropolitan Statistical Area, region, and certification status. In the second stage, lists of current residents and discharges were constructed for each agency so that six current residents and six discharges could be selected using a systematic probability sample. Included discharges that occurred because of the death of the patient.

Unit of Analysis:

Agency and individual

Sample Size:

1,425 facilities, current residents, and discharges in the 2000 survey

Racial and Ethnic Data Collected:

Uses OMB racial standards, but includes Don’t Know. Hispanic/ Latino origin was collected as Yes, No, Don’t Know.

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

National Hospital Discharge Survey (NHDS)

Agency:

National Center for Health Statistics, Centers for Disease Control and Prevention

Main Purpose of Data Collection:

To provide information annually on the inpatient use of hospitals in the United States.

Periodicity of Data Collection:

Annually since 1965

How Data are Collected:

Information on diagnoses, surgical and nonsurgical procedures, and patient characteristics is abstracted from the sample of medical records.

Unit of Analysis:

Hospital discharge

Sample Size:

Approximately 270,000 discharge records from approximately 500 nonfederal, short-stay hospitals each year

Racial and Ethnic Data Collected:

American Indian/Eskimo/Aleut; Asian or Pacific Islander; Black; White; Other—Specify; and Not Stated. Ethnic categories: Hispanic Origin; Non-Hispanic; Not Stated

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

National Nursing Home Survey (NNHS)

Agency:

National Center for Health Statistics, Centers for Disease Control and Prevention

Main Purpose of Data Collection:

To collect data from nursing homes, their residents, and their staff.

Periodicity of Data Collection:

1973-74, 1977, 1985, 1995, 1997, and 1999

How Data are Collected:

In the first stage, facilities were se

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

lected from a sample frame consisting of nursing homes with 3 or more beds, those certified by Medicare or Medicaid, and those with a state license to operate as a nursing home. Facilities were stratified by number of beds and certification status, and nursing homes were selected using systematic probability sample. In the second stage, lists of current residents and discharges were constructed for each facility, so that six current residents and six discharges could be selected using a systematic probability sample. Discharges that occurred because of death are included in the sample.

Unit of Analysis:

Care providers, care recipients, and facilities

Sample Size:

1,423 facilities, 8,215 current residents, and 6,913 discharges

Racial and Ethnic Data Collected:

Uses OMB standards, but includes Don’t Know. Hispanic/Latino origin was collected as Yes, No, Don’t Know.

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

National Survey of Substance Abuse Treatment Services (N-SSATS)

Agency:

Substance Abuse and Mental Health Services Administration

Main Purpose of Data Collection:

To collect the data on location, characteristics, services offered, and utilization for all facilities in the Inventory of Substance Abuse Treatment Services (I-SATS), which is a listing of all the known public and private

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

substance abuse treatment facilities in the United States and its territories.

Periodicity of Data Collection:

1976-1980, 1982, 1984, 1987, 1989-1993, 1995-1998, 1999 (abbreviated version because of redesign), 2000, 2002. The survey has been known by several different names.

How Data are Collected:

There is a full mail survey with a telephone follow-up in which a facility representative fills out the form.

Unit of Analysis:

Facility

Sample Size:

14,622 facilities eligible in 2000, and a 94 percent response rate

Racial and Ethnic Data Collected:

Not collected

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

The questionnaire asks if substance abuse treatment is offered in different languages at the facility. The question includes the following choices: American/Alaska Native languages (Hopi, Lakota, Navajo, Yupik, Other American/Alaska Native language), and Other languages (Arabic, Chinese, Creole, French, German, Hmong, Korean, Polish, Portuguese, Russian, Spanish, Vietnamese, and Other language).

CDC SURVEILLANCE DATA SYSTEMS

(in alphabetical order)

Adult Blood-Lead Epidemiology and Surveillance Program (ABLES)

Agency:

National Institute for Occupational Safety and Health

Purpose of Collection:

To reduce the number of adults with

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

blood lead levels of 25 mcg/dl or greater.

Source of Data:

Laboratory blood level reports

Universe of Data Collection:

A sample of adults in 35 states

Racial and Ethnic Data Collected:

Not collected

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Adult Spectrum of Disease (ASD) (HIV Patients)

Agency:

National Center for HIV, STD, and TB Prevention

Purpose of Collection:

To enumerate and characterize persons with HIV.

Source of Data:

Patient medical records

Universe of Data Collection:

All persons with HIV infection who access selected hospitals, outpatient facilities, and HIV treatment facilities in the 10 selected project areas.

Racial and Ethnic Data Collected:

American Indian/Alaska Native; Asian or Pacific Islander; Black, Not of Hispanic Origin; White, Not of Hispanic Origin; Hispanic

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Childhood Blood Lead Surveillance

Agency:

National Center for Environmental Health

Purpose of Collection:

To build state capacity to conduct surveillance; to establish a national surveillance system based on state systems; and to use data to direct

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

prevention activities at the local, state, and national levels.

Source of Data:

Laboratory slips

Universe of Data Collection:

Children aged 16 years or younger who participate in surveys or whose cases are reported to the state or local health department

Racial and Ethnic Data Collected:

Native American/Alaska Native; Asian/Pacific Islander (Asian Indian, Chinese, Filipino, Hawaiian, Korean, Vietnamese, Japanese, Samoan, Hmong, Guamanian, Other, Unknown); Black; White; Multiracial; Other; Unknown. Ethnic categories are: Hispanic; Non-Hispanic; Unknown. The quality of these data varies among states. The primary source of the data is laboratory slips, which often contain incomplete data on race and ethnicity.

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Congenital Syphilis Cases Investigation and Report (CSCIR)

Agency:

National Center for HIV, STD, and TB Prevention

Purpose of Collection:

To provide detailed data on congenital syphilis cases.

Source of Data:

Patient records

Universe of Data Collection:

All mothers and infants that are reported to CDC as having syphilis by STD control programs and health departments in all states, DC, selected cities, and U.S. dependencies and possessions

Racial and Ethnic Data Collected:

American Indian/Alaska Native; Asian

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

or Pacific Islander; Black; White; Other

Ethnic categories are: Hispanic; Not of Hispanic Origin

SEP Data Collected:

Not collected

Language and Acculturation Data:

Not collected

Creutzfeldt-Jakob Disease Surveillance System (CJD)

Agency:

National Center for Infectious Diseases

Purpose of Collection:

To collect brain autopsy material from persons with hemophilia and other bleeding disorders who had received care in treatment centers anywhere in the United States. This material is then examined to determine whether the disease can be transmitted through blood or blood products.

Source of Data:

Patient medical records

Universe of Data Collection:

Persons with hemophilia and other bleeding disorders who died and who had received care in treatment centers anywhere in the United States.

Racial and Ethnic Data Collected:

White (non-Hispanic), White (Hispanic), Black (non-Hispanic), Asian/ Pacific Islander, American Indian/ Alaska Native, Other.

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Diphtheria Antitoxin (DAT)

Agency:

National Immunization Program

Purpose of Collection:

To characterize cases of diphtheria and thereby identify risk factors for

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

the disease and areas at risk for outbreaks.

Source of Data:

Diphtheria antitoxin is only available through CDC. As such, it must be released on a case-by-case basis. CDC collects information on suspected diphtheria cases in the process of drug release and in follow-up via telephone discussions with treating physicians.

Universe of Data Collection:

All persons in the United States. who are or are suspected to be infected with diphtheria

Racial and Ethnic Data Collected:

Uses OMB standards

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Firearm Injury Surveillance Study

Agency:

National Center for Injury Prevention and Control

Purpose of Collection:

To understand the magnitude and characteristics of nonfatal firearm-related injuries in the United States.

Source of Data:

Medical records

Universe of Data Collection:

Persons with firearm injuries who receive treatment at United States hospitals that provide emergency services.

Racial and Ethnic Data Collected:

American Indian/Alaska Native; Asian or Pacific Islander; Black; White; Other. Ethnic categories are: Hispanic, Not of Hispanic Origin. Data on race and ethnicity are obtained as specified on hospital emergency department records. If a person is reported as Hispanic, race is usually recorded as “other.”

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Foodborne Disease Active Surveillance Network (FoodNet)

Agency:

National Center for Infectious Diseases

Purpose of Collection:

To help public health officials better understand the epidemiology of foodborne disease in the United States.

Source of Data:

Surveys, patient records

Universe of Data Collection:

Persons in the United States who have contracted a foodborne disease

Racial and Ethnic Data Collected:

Available, but categories are unspecified.

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Gonococcal Isolate Surveillance Project: Demographic/Clinical Data and Antimicrobial Susceptibility Testing (GISP)

Agency:

National Center for HIV, STD, and TB Prevention

Purpose of Collection:

To monitor trends in antimicrobial susceptibilities of strains of N. gonorrhoeae in the United States in order to establish a rational basis for the selection of gonococcal therapies.

Source of Data:

Gonococcal isolates, patient records

Universe of Data Collection:

N. gonorrhoeae isolates are collected from the first 25 men attending STD clinics each month in 26 cities in the United States.

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Racial and Ethnic Data Collected:

American Indian/Alaska Native; Asian or Pacific Islander; Black; White; Other. Ethnic categories are: Hispanic; Not of Hispanic Origin. Data on race may not be collected at each site.

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Haemophilus Influenzae Surveillance System (HI)

Agency:

Epidemiology Program Office, National Immunization Program, and National Center for Infectious Diseases

Purpose of Collection:

To compile information on all U.S. Haemophilus influenzae invasive disease cases reported to CDC via the National Electronic Telecommunications System for Surveillance (NETSS) since 1991, or via active surveillance in several locales since 1989.

Source of Data:

Patient medical records

Universe of Data Collection:

All U.S. Haemophilus influenzae invasive disease cases reported by health departments and hospitals

Racial and Ethnic Data Collected:

The OMB Statistical Directive 15 two-variable standard for reporting is used. Racial categories are: White; Black; Asian/Pacific Islander; American Indian/Alaska Native; Other. Ethnic categories are: Hispanic/Latino origin; not of Hispanic/Latino origin.

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Hemophilia Surveillance System (HSS)

Agency:

National Center for Infectious Diseases

Purpose of Collection:

To identify all persons with hemophilia in six states (CO, GA, LA, MA, NY, OK) and to characterize the population according to demographic and clinical features.

Source of Data:

Medical records

Universe of Data Collection:

All persons with hemophilia in six states

Racial and Ethnic Data Collected:

Racial and/or ethnic data are available using the following categories: White (non-Hispanic), White (Hispanic), Black (non-Hispanic), Asian/ Pacific Islander, American Indian/ Alaska Native, Other.

SEP Data Collected:

Education

Language and Acculturation Data Collected:

Not collected

HIV/AIDS Reporting System (HARS)

Agency:

National Center for HIV, STD, and TB Prevention

Purpose of Collection:

To monitor the total number of reported cases of HIV/AIDS from public, private, and government reporting facilities.

Source of Data:

Patient records

Universe of Data Collection:

All reported AIDS cases in the 50 states, territories, and possessions and HIV cases in states that require reporting of persons with HIV (not AIDS)

Racial and Ethnic Data Collected:

American Indian/Alaska Native; Asian or Pacific Islander; Black, Not of

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

Hispanic Origin; White, Not of Hispanic Origin; Hispanic

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

HIV Seroprevalence Studies

Agency:

National Center for HIV, STD, and TB Prevention

Purpose of Collection:

To monitor HIV seroprevalence among different groups of people, such as intravenous drug users, child-bearing women, and people who visit STD clinics.

Source of Data:

Patient records

Universe of Data Collection:

People entering drug treatment programs at 53 centers in 22 U.S. cities

Racial and Ethnic Data Collected:

American Indian/Alaska Native; Asian or Pacific Islander; Black; White; Other. Ethnic categories are: Hispanic (Mexican-American, Puerto Rican, Cuban); Not of Hispanic Origin

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Laboratory Surveillance of Cryptosporidium and Malaria via Public Health Laboratory Information Systems (PHLIS)

Agency:

National Center for Infectious Diseases

Purpose of Collection:

To identify persons with Cryptosporidium and malaria.

Source of Data:

Patient record

Universe of Data Collection:

All persons in the United States with Cryptosporidium or malaria

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Racial and Ethnic Data Collected:

American Indian or Alaska Native; Asian or Pacific Islander; Black; White; Unknown. Ethnic categories are: Hispanic; Non-Hispanic; Unknown.

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

National Bacterial Meningitis Reporting System (NBMRS)

Agency:

National Center for Infectious Diseases

Purpose of Collection:

To identify persons in the United States with bacterial meningitis.

Source of Data:

Patient record

Universe of Data Collection:

All persons in the United States with bacterial meningitis

Racial and Ethnic Data Collected:

Available, but the categories are unspecified.

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

National Campylobacter Surveillance System

Agency:

National Center for Infectious Diseases

Purpose of Collection:

To learn more about how Campylobacter causes disease and is spread.

Source of Data:

Patient record

Universe of Data Collection:

All persons in the United States with campylobacterlosis, which is caused by Campylobacter isolates in the body.

Racial and Ethnic Data Collected:

Not collected

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

National Malaria Surveillance System (NMSS)

Agency:

National Center for Infectious Diseases

Purpose of Collection:

To identify individuals with malaria in the United States.

Source of Data:

Medical records

Universe of Data Collection:

All persons with malaria in the United States

Racial and Ethnic Data Collected:

Available, but categories are not listed.

SEP Data Collected:

Occupation

Language and Acculturation Data Collected:

Not collected

National Nosocomial Infections Surveillance System (NNIS)

Agency:

National Center for Infectious Diseases

Purpose of Collection:

To describe the epidemiology of nosocomial infections, to describe antimicrobial resistance trends, and to produce nosocomial infection rates to use for comparison purposes.

Source of Data:

Laboratory charts

Universe of Data Collection:

All persons in the United States with nosocomial infections

Racial and Ethnic Data Collected:

Not collected

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

National Program of Cancer Registries (NPCR)

Agency:

National Center for Chronic Disease Prevention and Health Promotion

Purpose of Collection:

To rapidly establish and standardize the reporting of cancer among the states in order to provide: (1) timely feedback for evaluating progress toward achieving cancer-control objectives that include the “Healthy People 2010” objectives; (2) data to monitor the incidence and mortality trends in patterns by age, ethnicity, and geographic regions within the state, between states, and between regions; (3) guidance for health resource allocation; (4) data to evaluate state cancer-control activities; and (5) information to improve planning for future health care needs.

Source of Data:

Patient record

Universe of Data Collection:

All persons in the United States with cancer

Racial and Ethnic Data Collected:

White; Black; American Indian/Aleutian or Eskimo; Chinese; Japanese; Filipino; Hawaiian; Korean; Asian Indian/Pakistani; Vietnamese; Laotian; Hmong; Kampuchean; Thai; Micronesian, NOS; Chamorran; Guamanian, NOS; Polynesian, NOS; Tahitian; Samoan; Tongan; Melanesian, NOS; Fiji Islander; New Guinean; Other Asian (including Asian, NOS and Oriental, NOS); Pacific Islander, NOS; Other; Unknown.

Ethnic categories are: Spanish/Hispanic Origin; Non-Spanish/Non-Hispanic; Mexican (includes Chicano); Puerto Rican; Cuban; South or Central American (except

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

Brazilian); Other Spanish (includes European); Spanish, NOS/Hispanic, NOS/Latino, NOS (i.e., there is evidence other than surname or maiden name that the person is Hispanic, but he/she cannot be assigned to any of the preceding categories); Spanish (surname only) (only evidence of person’s Hispanic origin is surname or maiden name); Unknown Whether Spanish or Not

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

National Salmonella Surveillance System (NSSS)

Agency:

National Center for Infectious Diseases

Purpose of Collection:

To identify the incidence of salmonella infection in the United States

Source of Data:

Electronic data reports

Universe of Data Collection:

All persons in the United States infected with salmonella

Racial and Ethnic Data Collected:

Not available

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

National Surveillance for Domestic Arboviral Encephalitis Cases in Humans

Agency:

National Center for Infectious Diseases

Purpose of Collection:

To monitor arboviral encephalitis cases and reporting practices in the United States.

Source of Data:

Patient records

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Universe of Data Collection:

All persons in the United States infected with arboviral encephalitis

Racial and Ethnic Data Collected:

Native American/Alaska Native; Asian/Pacific Islander; Afro American; White; Other; Unknown. Ethnic categories are: Hispanic; Not Hispanic; Unknown

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

National Surveillance of Nonfatal Occupational Injury

Agency:

National Institute for Occupational Safety and Health

Purpose of Collection:

To obtain a national overview of nonfatal occupational injuries, to study specific types of injuries, to study specific worker populations, and to meet a variety of other occupational injury research needs.

Source of Data:

Patient records

Universe of Data Collection:

All civilians in the United States who suffer nonfatal work-related injuries.

Racial and Ethnic Data Collected:

White; Black; Other (additional information may be included in a free-text field); Not stated. Ethnicity may be included in a free-text field for Race = Other. Not all of the participating hospitals collect racial and ethnic data.

SEP Data Collected:

Information about the person’s industry

Language and Acculturation Data Collected:

Not collected

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Pertussis

Agency:

National Immunization Program

Purpose of Collection:

To provide details of each pertussis case reported by each state in the United States

Source of Data:

Patient records/interviews

Universe of Data Collection:

All persons in the United States with pertussis

Racial and Ethnic Data Collected:

Uses OMB standards

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Plague

Agency:

National Center for Infectious Diseases

Purpose of Collection:

To identify presumptive and confirmed cases of plague.

Source of Data:

Patient records

Universe of Data Collection:

All persons presumed or confirmed to have plague

Racial and Ethnic Data Collected:

Racial and/or ethnic data are available. There have only been about 400 plague cases over the past 40 years. The racial and ethnic categories have been used for the past four decades. Changes from the original categories are in parentheses below. No effort has been made to update them to fit current styles. The categories are: White (or Caucasian, Non-Hispanic); Hispanic (or Caucasian, Hispanic); Indian (now Native American, listed by tribe whenever possible, e.g., AIN = American Indian Navajo, American Indian Pueblo, etc.); Oriental (now

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

would be referred to as Asian—only one such case); Pacific Islander (only one such person—from the Philippines). There are no black cases on the list. If such a case did occur, however, it would be recorded as black for race/ethnicity.

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Sentinel Counties Surveillance for Acute Study of Viral Hepatitis

Agency:

National Center for Infectious Diseases

Purpose of Collection:

To monitor incidence trends and transmission patterns for hepatitis A, hepatitis B, hepatitis C, and other emerging viral hepatitis infections. In addition, the system is used to monitor the effectiveness of prevention and control programs for these diseases.

Source of Data:

Patient records

Universe of Data Collection:

All persons in the United States infected with viral hepatitis

Racial and Ethnic Data Collected:

White (not of Hispanic origin); Black (not of Hispanic origin); American Indian or Alaska Native; Asian or Pacific Islander; Hispanic; Unknown

SEP Data Collected:

Education and income

Language and Acculturation Data Collected:

Not collected

Sentinel-Site Laboratory-Based Surveillance for Cyclospora

Agency:

National Center for Infectious Diseases

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Purpose of Collection:

To identify Cyclospora in eight states and the District of Columbia.

Source of Data:

Laboratory samples

Universe of Data Collection:

All cases of Cyclospora in the United States

Racial and Ethnic Data Collected:

Not collected

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

State-Based Emergency Department Injury Surveillance

Agency:

National Center for Injury Prevention and Control

Purpose of Collection:

To capture the statewide incidence of emergency department-related injuries.

Source of Data:

Medical records

Universe of Data Collection:

All persons in the United States who suffer an injury that causes them to visit an emergency department

Racial and Ethnic Data Collected:

Not collected

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

STD Surveillance Systems

Agency:

National Center for HIV, STD, and TB Prevention

Purpose of Collection:

To collect data on cases of syphilis (all stages), congenital syphilis (before 1995), gonorrhea, chancroid, and chlamydia.

Source of Data:

Patient medical records

Universe of Data Collection:

People diagnosed with any of the

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

above diseases who visit private doctors or nurses, hospitals, and public health clinics, and data from public health laboratories and state/ local health departments

Racial and Ethnic Data Collected:

Not collected

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Streptococcus Pneumoniae and Haemophilus Influenzae

Agency:

National Center for Infectious Diseases

Purpose of Collection:

Patterns and rates of disease cases are used to monitor and modify prevention strategies to examine risk factors for disease, and to monitor trends in the development of antimicrobial resistance of isolates.

Source of Data:

Patient records

Universe of Data Collection:

All persons in Alaska with Streptococcus Pneumoniae and Haemophilus Influenzae.

Racial and Ethnic Data Collected:

Collected, but categories are not specified.

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Surveillance for Giardia

Agency:

National Center for Infectious Diseases

Purpose of Collection:

To identify cases of giardia within the United States.

Source of Data:

Patient records

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Universe of Data Collection:

All persons in the United States with giardia.

Racial and Ethnic Data Collected:

American Indian or Alaska Native; Asian or Pacific Islander; Black; White; Unknown. Ethnic categories are: Hispanic; Non-Hispanic; Unknown.

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Surveillance for Pneumocystis Carinii Pneumonia Treatment Failures

Agency:

National Center for Infectious Diseases

Purpose of Collection:

To study treatment outcome among appropriately treated laboratory-confirmed Pneumocystis Carinii Pneumonia in HIV-positive individuals.

Source of Data:

Patient records

Universe of Data Collection:

All persons in the United States with HIV who are treated for Pneumacystis Carinii Pneumonia

Racial and Ethnic Data Collected:

White, Non-Hispanic; Black, Non-Hispanic; Hispanic/Latino; American Indian/Alaska Native; Asian/Pacific Islander; Other; Unknown

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Surveillance for Trichinosis

Agency:

National Center for Infectious Diseases

Purpose of Collection:

To monitor trends in trichinosis.

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Source of Data:

Patient records

Universe of Data Collection:

All persons in the United States with trichinosis

Racial and Ethnic Data Collected:

American Indian or Alaska Native; Asian or Pacific Islander; Black; White; Unknown. Ethnic categories are: Hispanic; Non-Hispanic; Unknown.

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Surveillance for Tuberculosis Infection in Health Care Workers (StaffTRAK-TB)

Agency:

National Center for HIV, STD, and TB Prevention

Purpose of Collection:

To test health care workers for TB infection routinely as per CDC infection control guidelines.

Source of Data:

Direct interview/self-report

Universe of Data Collection:

All health care workers from participating hospitals

Racial and Ethnic Data Collected:

Asian, Black, Hispanic, American Indian/Alaska Native, White, Other races

SEP Data Collected:

Occupation

Language and Acculturation Data Collected:

Country of birth

Tetanus

Agency:

National Immunization Program

Purpose of Collection:

To provide data describing each tetanus case with respect to the wound, type of wound, and where it occurred.

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Source of Data:

Patient records

Universe of Data Collection:

All persons in the United States with tetanus

Racial and Ethnic Data Collected:

Uses OMB standards

SEP Data Collected:

Occupation

Language and Acculturation Data Collected:

Not collected

Traumatic Brain Injury Surveillance System (TBISS)

Agency:

National Center for Injury Prevention and Control

Purpose of Collection:

To understand the magnitude and characteristics of hospitalized and fatal traumatic brain injuries in the United States; to collect program wide information that can be used to help design targeted prevention programs addressing specific causes of traumatic brain injuries and populations at higher risk; to improve injured persons’ access to health care; and to improve other services they need after injury.

Source of Data:

Patient records

Universe of Data Collection:

All persons in the United States who suffer a traumatic brain injury

Racial and Ethnic Data Collected:

American Indian/Alaska Native; Asian or Pacific Islander; Black; White; Other. Categories of ethnicity are Hispanic and Not of Hispanic Origin. Since information on nonfatal cases is obtained from hospital discharge data systems, data on race/ethnicity are not available from states.

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Tuberculosis Information Management System (TIMS)

Agency:

National Center for HIV, STD, and TB Prevention

Purpose of Collection:

To assist health departments and other facilities to manage TB patients, to conduct TB surveillance activities, and to manage TB programs overall.

Source of Data:

Direct interview and patient records

Universe of Data Collection:

All persons with TB who visit private doctors or nurses, hospitals, and public health clinics, and data from public health laboratories and state/ local health departments

Racial and Ethnic Data Collected:

Uses OMB standards

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Unexplained Deaths and Serious Illnesses Surveillance

Agency:

National Center for Infectious Diseases

Purpose of Collection:

To identify and collect clinical specimens from people who have suffered unexplained deaths or serious illnesses.

Source of Data:

Medical records

Universe of Data Collection:

All previously healthy persons in the United States, aged 1-49 years, who have died for no obvious reason or who have experienced an unexplained serious illness

Racial and Ethnic Data Collected:

Available, but categories are not specified

SEP Data Collected:

Occupation

Language and Acculturation Data Collected:

Not collected

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Universal Data Collection and Serum Specimen Collection System (UDC)

Agency:

National Center for Infectious Diseases

Purpose of Collection:

To collect prospective clinical data on persons with hemophilia and other bleeding disorders in the United States who receive at least some of their care from federally sponsored hemophilia treatment centers.

Source of Data:

Medical records

Universe of Data Collection:

All persons in the United States with hemophilia and other bleeding disorders who receive at least some of their care from federally sponsored hemophilia treatment centers

Racial and Ethnic Data Collected:

Available, but no standardized categories are used

SEP Data Collected:

Education

Language and Acculturation Data Collected:

Not collected

United States Influenza Sentinel Physician Surveillance Network

Agency:

National Center for Infectious Diseases

Purpose of Collection:

To identify how many people in the United States have influenza or an influenza-like illness.

Source of Data:

Physician survey

Universe of Data Collection:

All persons who visit a doctor in the United States and exhibit symptoms of influenza

Racial and Ethnic Data Collected:

Not collected

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Vaccine Adverse Event Reporting System (VAERS)

Agency:

National Immunization Program

Purpose of Collection:

To compile and monitor national estimates of adverse events by vaccine antigen and vaccine lot.

Source of Data:

Patient records

Universe of Data Collection:

All persons in the United States who experience an adverse event due to vaccination

Racial and Ethnic Data Collected:

Not collected

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Viral Hepatitis Surveillance Program (VHSP)

Agency:

National Center for Infectious Diseases

Purpose of Collection:

To compile clinical, serologic, and epidemiologic data on cases of hepatitis A, B, and C and to monitor the effectiveness of prevention and control programs for these diseases.

Source of Data:

Patient records

Universe of Data Collection:

All persons in the United States who have hepatitis A, B, or C

Racial and Ethnic Data Collected:

American Indian or Alaska Native; Asian or Pacific Islander; Black; White; Unknown. Ethnic categories are: Hispanic; non-Hispanic; Unknown.

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Place of birth, either United States. or Other (specify), and place of birth of the person’s mother

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Waterborne Diseases Outbreak Surveillance System (WBDOSS)

Agency:

National Center for Infectious Diseases

Purpose of Collection:

To collect and summarize data on waterborne disease outbreaks and identify trends in outbreaks summarized by the type of contaminant and by the type of water that was contaminated.

Source of Data:

Survey and patient records

Universe of Data Collection:

All persons in the United States infected with a waterborne disease

Racial and Ethnic Data Collected:

Not collected

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

HUMAN SERVICE PROGRAMS IN DHHS

Child Care and Development Block Grant

Agency:

Administration for Children and Families

Purpose:

To make grants to states and tribes to assist low-income families with child care and to: (1) allow each state maximum flexibility in developing child care programs and policies that best suit the needs of children and parents within state; (2) promote parental choice to empower working parents to make their own decisions on the child care that best suits their family’s needs; (3) encourage states to provide consumer education information to help parents make informed choices about child care; (4) assist states to provide child care to parents trying to achieve independence from

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

public assistance; and (5) assist states in implementing the health, safety, licensing, and registration standards established in state regulations.

Population Covered:

Children under the age of 13 (or up to age 19 if physically or mentally incapable of self-care or under court supervision) who reside with a family whose income does not exceed 85 percent of the state median income for a family of the same size, and who reside with a parent (or parents) who is working or attending job training or an educational program; or who are in need of, or are receiving protective services.

Racial and Ethnic Data Collected:

Uses OMB standards

SEP Data Collected:

Total monthly family income and sources of family income are collected.

Language and Acculturation Data Collected:

Not collected

Child Support Enforcement Program (CSE)

Agency:

Administration for Children and Families

Purpose:

This program is a federal/state/local partnership that works to locate noncustodial parents, establish paternity when necessary, establish orders for support, and collect child support payments for families.

Population Covered:

Services are available to a parent with custody of a child who has a parent living outside of the home. Services are available automatically for families receiving assistance under the Temporary Assistance for Needy Families (TANF) program. Current

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

child support collected reimburses the state and federal governments for TANF payments made to the family. Those not receiving public assistance can apply for child support services. Child support payments that are collected on behalf of non-TANF families are sent to the family.

Racial and Ethnic Data Collected:

Not collected

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Adoption and Foster Care Analysis and Reporting System

Agency:

Administration for Children and Families

Purpose:

Collects information on all children in foster care for whom the state child welfare agency has responsibility as well as children who are adopted under the auspices of the state’s public child welfare agency.

Population Covered:

All children in foster care

Racial and Ethnic Data Collected:

Uses OMB standards (can choose more than one race)

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Head Start

Agency:

Head Start Bureau, Administration for Children and Families

Purpose:

To increase the school readiness of young children in low-income families.

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

Population Covered:

Children from low-income families, from birth to age 5

Racial and Ethnic Data Collected:

Uses OMB standards

SEP Data Collected:

Household income

Language and Acculturation Data:

Language spoken at home and a rating of English proficiency are gathered.

Maternal and Child Health Block Grant (MCH)

Agency:

Maternal and Child Health Bureau, Health Resources and Services Administration

Purpose:

To promote and improve the health of all United States mothers and children by supporting states’ efforts to extend and improve health and welfare services for mothers and children.

Population Covered:

All mothers and children in the United States

Racial and Ethnic Data Collected:

Uses OMB standards (can choose more than one race)

SEP Data Collected:

Income

Language and Acculturation Data Collected:

Not collected

The National Child Abuse and Neglect Data System

Agency:

Administration for Children and Families

Purpose:

To provide state and national data on child abuse and neglect for program planning, program review, and policy development.

Population Covered:

All children in the United States

Racial and Ethnic Data Collected:

Uses OMB standards

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

National Survey of Child and Adolescent Well-Being

Agency:

Administration for Children and Families

Purpose:

To examine child and family well-being outcomes in detail and seek to relate those outcomes to their experience with the child welfare system and to family characteristics, community environment, and other factors. The study describes the child welfare system and the experiences of children and families who come in contact with the system.

Population Covered:

Children who are at risk of abuse or neglect or are in the child welfare system

Racial and Ethnic Data Collected:

Uses OMB standards

SEP Data Collected:

Information about financial resources available to the child’s family is collected.

Language and Acculturation Data Collected:

Not collected

Social Services Block Grant (SSBG)

Agency:

Administration for Children and Families

Purpose:

To fund states for the provision of social services directed toward achieving economic self-support or self-sufficiency, preventing or remedying neglect, abuse, or the exploitation of children and adults, preventing or reducing inappropriate institutional

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×

 

ization, and securing referral for institutional care, where appropriate.

Population Covered:

All people in the United States

Racial and Ethnic Data Collected:

Not collected

SEP Data Collected:

Not collected

Language and Acculturation Data Collected:

Not collected

Temporary Assistance to Needy Families (TANF)

Agency:

Office of Family Assistance, Administration for Children and Families

Purpose:

To provide assistance and work opportunities to needy families by granting states with federal funds and wide flexibility to develop and implement their own welfare programs.

Population Covered:

Low-income people in the United States

Racial and Ethnic Data Collected:

Uses OMB standards

SEP Data Collected:

Collects employment, income, and cash resources information

Language and Acculturation Data Collected:

Not collected

Uses OMB standards: American Indian and Alaska Native; Asian; Black or African American; Native Hawaiian and Other Pacific Islander; White. Respondents shall be allowed the option of selecting one or more racial categories. There are two categories for data on ethnicity: Hispanic or Latino and Not Hispanic or Latino.

Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×
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Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×
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×
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Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×
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Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×
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Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×
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Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×
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Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×
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Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×
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Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×
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Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×
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Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×
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Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×
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×
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Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×
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Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
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Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
×
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×
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×
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Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
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Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
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Suggested Citation:"Appendix A Descriptions of National Health and Health Care Surveys." National Research Council. 2004. Eliminating Health Disparities: Measurement and Data Needs. Washington, DC: The National Academies Press. doi: 10.17226/10979.
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Disparities in health and health care across racial, ethnic, and socioeconomic backgrounds in the United States are well documented. The reasons for these disparities are, however, not well understood. Current data available on race, ethnicity, SEP, and accumulation and language use are severely limited. The report examines data collection and reporting systems relating to the collection of data on race, ethnicity, and socioeconomic position and offers recommendations.

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