Section Five
AVAILABLE DATA SOURCES

Although the development of leading health indicators should not be limited by currently existing data sources, it should benefit from the wealth of data collected on a regular basis. This section reviews important data sources that are available to monitor health, beginning with a review of the most critical and frequently used data systems and sets maintained by the Department of Health and Human Services. Many of these data are used to monitor the objectives and subobjectives outlined in Healthy People 2000. Additional data sets maintained outside HHS also are described. HHS will make available to the report panel experts on Federal health data systems to provide detailed descriptions of data systems or answer specific questions.

As Healthy People 2010 is developed, the HHS databases used to monitor the objectives will be modified, as needed. In addition, HHS data systems and sets will be modified to comply with recently developed Federal policy about the collection of racial and ethnic data. In October 1997, the Secretary of HHS issued a policy directive requiring the inclusion of information on race and ethnicity in HHS-sponsored data collection systems.

Key HHS Data Sources

Over 200 data systems and sets are used to monitor Healthy People 2000. These data are compiled in the DATA2000 Monitoring System, an electronic database containing the national baseline and monitoring data for each Healthy People objective and subobjective. As a component of the CDC WONDER system, DATA2000 is available to the public through the Center for Disease Control and Prevention's on-line public health information system (on the Internet at http://wonder.cdc.gov). Detailed statistical information about the data is published in the National Center for Health Statistics Healthy People 2000 Statistical Notes (also available on the Internet at http://www.cdc.gov/nchswww/products/pubs/pubd/Healthy People2k/Healthy People2k.htm). It is likely that NCHS will develop a new database to monitor health objectives in Healthy People 2010.

The HHS data systems and sets most critical to monitoring Healthy People include:

• Vital Statistics
• National Health and Nutrition Examination Survey (NHANES)
• National Health Interview Survey (NHIS)
• Youth Risk Behavior Survey (YRBS)
• Primary Care Provider Survey (PCPS)
• National Survey of Worksite Health Promotion Activities (NSWHPA)
• National Survey of Family Growth (NSFG)
• Behavioral Risk Factor Surveillance System (BRFSS)
• National Household Survey on Drug Abuse (NHSDA)
• National Hospital Discharge Survey (NHDS)
• National Notifiable Disease Surveillance System (NNDSS)
• National Immunization Survey (NIS)

Listed below are additional Government-sponsored data systems and sets containing important data but not currently not used in Healthy People:

• National Comorbidity Survey (NCS)
• Epidemiologic Catchment Area Study (ECAS)
• Medical Expenditure Panel Survey (MEPS)
• Medicare Current Beneficiary Survey (MCBS)

The periodicity of the data varies from annual to biennial and periodic. Geographic coverage also varies. Some data systems provide national estimates, while others provide State and sub-State (i.e., county or city) estimates as well. Important characteristics of the data systems and sets are described below.

• Vital Statistics (Natality and Mortality), National Center for Health Statistics, CDC: Mortality data, a critical data source for monitoring Healthy People, are obtained from certificates filed for deaths occurring in each State. Deaths of U.S. citizens occurring outside the U.S. are not included in the data set. In addition to the cause of death, mortality data provide information about education, place of death, occupation, marital status, place of birth, demographic information, and underlying causes-of-death. Natality information, also a critical data source for Healthy People, is obtained from certificates filed for births occurring in each State. Information about the infant, mother, and prenatal care is available from this source. The mortality and natality data are available to monitor national, State, and local trends. Final mortality data are released on an annual basis, 18 months after the close of each year; preliminary data are available about 9 months after the close of the year. The most recent final data are from 1995; preliminary data are available for 1996.
• National Health and Nutrition Examination Survey, National Center for Health Statistics, CDC: Because the data are collected from direct examination, NHANES is considered the "gold standard" of surveys by many health researchers. Through a national probability sample (of 33,994 persons over 2 months of age), NHANES collects nationally representative information on the health and nutritional status of the population of the United States through interviews and direct physical examinations. Topics investigated in NHANES III (1988-94) include high blood pressure, high blood cholesterol, obesity, passive smoking, lung disease, osteoporosis, HIV, hepatitis, Helicobacter pylori, immunization status, diabetes, allergies, growth and development, blood lead, anemia, food sufficiency, dietary intake (including fats and antioxidants), and nutritional blood measures. The usefulness of the survey for monitoring health is limited in two ways. First, it is not conducted on an annual basis. NHANES is a periodic survey. The most recent data were collected from 1988 through 1994; the next NHANES is planned for 1999. Second, the survey is national in design and cannot be used to track progress in States or counties. NCHS has proposed to conduct NHANES on a continuous basis, which would allow annual updates of a rolling average. Funding for the proposal has not been guaranteed.
• National Health Interview Survey, National Center for Health Statistics, CDC: The NHIS is a continuing national personal interview survey of the U.S. civilian population. A probability sample of households is interviewed each week by personnel from the U.S. Bureau of the Census to obtain information about health and other characteristics of each living member of the household. Survey results are reported on an annual basis and cover such topics as number of restricted-activity days, bed days, work- or school-loss days, all physician visits, acute and chronic conditions responsible for the visits, long-term limitations of activity, and related chronic conditions. The usefulness of the survey for monitoring health is limited in several ways. First, the survey is national in design and cannot be used to track progress in all States and counties. The NHIS has been used to estimate indicators in several large states. Second, the information is self-reported (health status is unconfirmed by direct examination). Currently, provisional data are available for 1996. Data usually become available about one year after collection. In addition to the annual core data set, supplements on selected health topics also are collected. Most supplements are collected two or three times in a given decade; hence many health objectives which are monitored with survey data from NHIS supplements currently are not available on an annual basis.
• Youth Risk Behavior Survey, National Center for Chronic Disease Prevention and Health Promotion, CDC: The YRBS is collected on a biennial schedule and provides national information about health behaviors among youth. Topics covered include behaviors related to unintentional and intentional injuries, tobacco use, use of alcohol and drugs, sexual behavior, dietary behavior, and physical activity. The survey consists of an 84-item self-administered and anonymous questionnaire. The school-based survey is administered to 9-12th grade students in the spring. A State-level YRBS, containing many of the same measures as the national survey, has been implemented in about 40 States.
• Primary Care Provider Surveys, Office of Disease Prevention and Health Promotion (ODPHP), Office of Public Health and Science: The Primary Care Provider Survey was initiated in 1992 to collect information about the delivery of clinical preventive services from clinicians (members of the American Academy of Family Physicians, American Academy of Pediatrics, American College of Obstetricians and Gynecologists, American College of Physicians, and National Alliance of Nurse Practitioners). In 1997, ODPHP partnered with the American College of Preventive Medicine for a second round of data collection. The 1997 data will be available in 1998.
• National Survey of Worksite Health Promotion Activities, Office of Disease Prevention and Health Promotion, Office of Public Health and Science: The worksite survey was conducted in the mid-1980s and again in 1992. It collects information about health promotion activities provided in worksites with more than 50 employees across a range of industries. The topics include worksite health policies, health-related screenings, health information or activities, and health facilities and services. Worksites surveyed represent a geographically dispersed, random sample within the United States. Since 1992, funding has not been allocated to conduct the survey. However, CDC's 1995 survey on Business Responds to AIDS used a similar methodology and provides updates for many of the same objectives.
• National Survey of Family Growth, National Center for Health Statistics, CDC: The NSFG is a multipurpose survey based on personal interviews with a national sample of women 15-44 years of age in the United States. It covers topics related to women's health and pregnancy. Data from the 1995 survey are available and include information about the number of children women have had and plan to have in the future, intended and unintended births, sexual intercourse, marriage and cohabitation, contraceptive use, infertility, breast feeding, maternity leave, health insurance coverage, smoking, HIV testing, and other topics. NCHS plans to conduct the survey in 2000, 2003, and 2006. Beginning in 2000, the survey will include men.
• Behavioral Risk Factor Surveillance System, National Center for Chronic Disease Prevention and Health Promotion, CDC: The BRFSS is a unique, State-based surveillance system active in all 50 states. This system is a primary source of State-based information on risk behaviors among adult populations. It allows comparisons between States. In each State, a similar method of selecting respondents and the same core questions are used to facilitate comparisons. In addition, States are able to sample special groups. Every month, States select a random sample of adults for a telephone interview. The questionnaire involves core questions used by all States, standard sets of questions on selected topics that States may choose to add, and questions developed by individual states on issues of special interest. Information about age, gender, racial and ethnic background, education, and other demographic factors is gathered so that estimates can be made for specific population groups and interventions can be directed to people at greatest risk. Currently, the BRFSS does not provide national data. CDC is conducting a statistical evaluation to determine whether and how national estimates can be obtained from the BRFSS. CDC now presents the median values for all States, which may or may not accurately reflect the national average.
• National Household Survey on Drug Abuse, Substance Abuse and Mental Health Services Administration (SAMHSA): The NHSDA reports on the prevalence, patterns, and consequences of drug and alcohol use and abuse in the general U.S. civilian population age 12 and over. Data are collected on the use of illicit drugs, the nonmedical use of licit drugs, and the use of alcohol and tobacco products. The survey is conducted annually and is designed to produce drug and alcohol use incidence and prevalence estimates. Data also are collected periodically on special topics of interest such as criminal behavior, treatment, mental health and attitudes about drugs.
• National Hospital Discharge Survey, National Center for Health Statistics, CDC: The NHDS is an annual survey that provides important information about the types of health conditions that result in hospitalizations. It covers discharges from a national sample of noninstitutional, non-Federal, short-stay hospitals in the United States. Data describe demographic characteristics of patients, expected source of payment, medical information, length of stay, discharge status, up to seven diagnoses, and up to four procedures, as well as information about the hospital. Data are limited to the variables included on hospital discharge forms (i.e., UB-82, UB-92). Diagnostic categories do not include external causes (E-codes), limiting the information about injuries and environmental-related illnesses. Race and Hispanic origin data are underreported in NHDS.
• National Notifiable Disease Surveillance System, Epidemiology Program Office, CDC: CDC is responsible for the collection and publication of data concerning nationally notifiable diseases. The list, revised periodically, currently contains 52 infectious diseases. These data are published weekly in the MMWR and at year end in the annual Summary of Notifiable Diseases, United States.
• National Immunization Survey, National Center for Health Statistics, CDC: The NIS is a random telephone interview that collects information on the immunization coverage of children 19-35 months of age across the United States. Data are used to monitor immunization coverage in the preschool population in 78 nonoverlapping geographic immunization action plan areas, covering the entire Nation.
• National Comorbidity Survey, National Institute of Mental Health, NIH: The NCS collected information about drug abuse and mental health (of persons age 15-54) from a nationally representative sample of 8,000 households. It provides estimates of psychiatric disorders including substance abuse, as defined by DSM-III-R criteria. The survey was conducted in 1991.
• Epidemiologic Catchment Area Study, National Institute of Mental Health, NIH: The ECAS was the largest, most comprehensive survey of mental health disorders ever conducted in the U.S. The survey, conducted from 1981 through 1985, incorporated two waves of personal interviews one year apart with a brief telephone interview in between, which allows for the study of incidence rates. Five universities collaborated in the study, each sampling over 3,000 community residents and 500 institutional residents, all age 18 or over.
• Medical Expenditure Panel Survey, cosponsored by the Agency for Health Care Policy and Research and the National Center for Health Statistics: The MEPS is a nationally representative survey of health care use, expenditures, sources of payment, and insurance coverage for the U.S. civilian noninstitutionalized population, as well as a national survey of nursing homes and their residents. The survey yields comprehensive data that estimate the level and distribution of health care use and expenditures, monitor the dynamics of the health care delivery and insurance systems, and assess health care policy implications.
• Medicare Current Beneficiary Survey, the Health Care Financing Administration (HCFA): The MCBS is a nationally represented household survey of Medicare beneficiaries who are disabled or aged (65 years or older). There are 12,000 beneficiaries who participate in this four-year panel survey. Data from the survey cover medical expenditures, out-of-pocket costs, additional insurance coverage, preventive services such as adult immunizations and mammography, health status, and functional status.

Other key data sources

A number of data systems and sets maintained outside of HHS also are important for monitoring the health of Americans. Several data sets and the organizations that maintain them are listed below:

• Census of Fatal Occupational Injury, Bureau of Labor Statistics, Department of Labor
• Annual Survey of Occupational Injuries and Illnesses, Bureau of Labor Statistics, Department of Labor
• Fatality and Analysis Reporting System (FARS), National Highway Traffic Safety Administration, Department of Transportation
• Toxic Chemical Release Inventory, Environmental Protection Agency
• National Water Quality Inventory, Environmental Protection Agency
• National Air Quality and Emissions Trends Report/Aerometric Information Retrieval System, Environmental Protection Agency
• National Center for Educational Statistics, Department of Education
• Monitoring the Future Study (MFS), University of Michigan

Adequacy of Current Data Sources for Monitoring Health

Currently available data sources are an excellent source for monitoring mortality, physical disease, and some risk behaviors. Of the 319 Healthy People objectives, all but 11 have baseline data, and most have at least one follow-up data point (44 only have one data point). Table 6 displays current data sources for the candidate sets of leading health indicators presented in this report.

Although not yet available, the Conference of State and Territorial Epidemiologists (CSTE) has called for creation of an overarching National Public Health Surveillance System to improve approaches to public health surveillance. CSTE has involved epidemiologists at the state, local, and national level, as well as professional organizations, in a collaborative process to identify the health events and determinants that should be under public health surveillance nationwide and the most appropriate methods and information system for each. These health events include infectious diseases, toxic exposures, chronic diseases, environmental exposures, reproductive health, maternal and child health, occupational illnesses, and health care systems. Upon approval of proposed measures, they will become part of the National Public Health Surveillance System.

For the development of leading health indicators, it will be essential to draw on currently available data sources and to set priorities for data improvements. To monitor some health indicators, new data collection initiatives may be necessary. For others, current data initiatives may require modifications in the information collected or the periodicity of collection or the level of sampling (State versus national, over sampling for special population issues). HHS also may need to look beyond the data sources it maintains to other existing sources of data. This is especially true for social indicators that are related to well-being in many areas (e.g., poverty, education, crime).

The elimination of health disparities continues to be a goal that drives the Healthy People initiative. Yet, in some important areas, data about special population issues related to high risk age groups, ethnicity or race, gender, or economic groups cannot be tracked. Such data gaps must be addressed as priorities.

More than ever, changing health behaviors is viewed as an essential factor in health improvement activities. Yet, for many important individual behaviors such as nutrition and physical activity, there are substantial data gaps. For example, data about physical activity and weight loss practices do not exist for children age 6-17. In addition, much information is not available for State and local populations. For some types of health problems, such as mental health and substance abuse, the adequacy of data should be examined. Similarly, the availability of information about work-related conditions and non-infectious diseases such as arthritis and asthma should be examined.

The working group looks forward to expert panel guidance about ways in which to strengthen the ability to monitor the leading health indicators. Recommendations would be especially helpful in areas such as the periodicity of data collection, the level at which data are collected (national, State, sub-State), the importance of monitoring the health of racial and ethnic minorities, and the ability to measure the relationship of health and income and health and social factors.

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