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 II. Data Sources on Access and Health Disparities

A 1998 issue brief by Mathematica Policy Research, Inc. states that “achieving ‘equitable’ access to health care has long been valued in this country, although there is little consensus about what the term actually means.”(1) The Institute of Medicine (IOM), however, in its 1996 report on primary care defined accessibility as “the ease with which a patient can initiate an interaction for any health problems with a clinician (e.g. by phone or at a treatment location) and includes efforts to eliminate barriers such as those posed by geography, administrative hurdles, financing, culture, and language.”(2) Unfortunately, there are few valid and reliable measures that encompass the diverse issues comprising access barriers, especially at the state or local level.
Some of the most common access measures in national and state surveys include insurance coverage, availability of a usual source of care, and physician supply. Other access-related topics categorized in the Mathematica brief include:

  • delays in seeking care
  • barriers to care
  • physician and hospital use
  • preventive health services use
  • satisfaction with care
  • satisfaction with health plan
  • relationship to health status
  • other managed care features of a health plan.

A summary of the national population-based surveys which include measures for each of the above categories is available from Mathematica, although it should be noted that some of the featured surveys provide estimates only at the national level.


The National Center for Health Statistics (NCHS) 
The NCHS is the federal government's principal vital and health statistics agency. NCHS maintains two major types of data systems: systems based on populations, containing data collected through personal interviews or examinations; and systems based on records, containing data collected from vital and medical records. NCHS coordinates a number of surveys and information systems, such as the National Health Interview Survey, which provide national and some state data relevant to assessing health status and access to care. A summary of selected national population-based surveys and data systems administered by NCHS is included as Appendix I.

Many of the NCHS data sources are synthesized in the annual CDC publication entitled Health, United States. This book presents national trends in health statistics on such topics as birth and death rates, infant mortality, life expectancy, morbidity and health status, risk factors, use of ambulatory care and inpatient care, health personnel and facilities, financing of health care, health insurance and managed care, and other health topics. Where available, this comprehensive report includes state-by-state data.

 

STATE/COUNTY/CITY HEALTH PROFILES

State and Local Health Departments
The availability of comparable local level health status data represents the ideal for assessment and planning purposes. Most state and some local health departments collect and report county or district-level data on an annual or semi-annual basis. However, the number of health status indicators included in local profiles published by the states -- as well as the level of detail on racial and ethnic characteristics -- varies widely.

Many, but not all, of the available profiles include demographic information, with categories broken out by age and race. Many include socioeconomic data as well. Infant mortality data is widely available, as well as other mortality information, usually presented in a “Leading Cause of Death” format. Local behavioral risk factors and trend information is much less common. Most states present one page of data per county, although some are much more extensive. In general, data included in existing county or regional profiles falls into the following categories:

  • demographics
  • vital statistics
  • disease surveillance
  • behavioral risks
  • service utilization
  • survey results
  • synthetic estimates
  • program activities and evaluations.

American Fact Finder - U.S. Census Bureau
To compliment local health-related data, the U.S. Census Bureau maintains Internet access via the American Fact Finder to additional extensive local level data, including options to create customized profiles of selected social, economic, or housing characteristics for states, cities, counties, congressional districts, and more.

Behavioral Risk Factor Surveillance System (BRFSS) - CDC 
In addition to the national population-based surveys, all states collect additional access, health insurance coverage, and health risk factor data -- reported by age and race -- through the BRFSS. BRFSS data is collected via a random sample of adults in a telephone interview. The BRFSS questionnaire has three parts:

  1. Core questions used by all states
  2. Standard sets of questions on selected topics that states may choose to add
  3. Questions developed by individual states on issues of special interest (e.g., prostate cancer, bicycle helmet use).

States use information from the BRFSS for many purposes, including:

  • Determining priority health issues and developing strategic plans
  • Monitoring the effectiveness of intervention measures and the achievement of prevention program goals
  • Supporting appropriate public health policy
  • Creating reports, fact sheets, press releases, and other publications designed to educate the public, the health community, and policymakers about disease prevention.

The BRFSS Web site provides state-by-state information of how BRFSS is used in each state.
BRFSS data also enable public health professionals to monitor progress in achieving the nation‘s health objectives, as outlined in Healthy People 2010. In 1997, CDC published a report based on BRFSS data entitled “State-Specific Prevalence of Selected Health Behaviors, by Race and Ethnicity -- Behavioral Risk Factor Surveillance System,” which is the first state-by-state look at risks for chronic diseases and injury for the five major racial and ethnic groups. 


Big Cities Health Inventory - The National Association of County and City Health Officials
(NACCHO)
The National Association of County and City Health Officials, in collaboration with health departments across the country, has taken on the task of collecting and disseminating information on major health indicators for the 54 largest metropolitan areas in the United States. Originally started by the Chicago Department of Public Health, the report presents data on 20 important health indicators including AIDS, cancers, tuberculosis, sexually transmitted diseases, homicide, heart disease, infant mortality, low birth weight and more. Indicators of morbidity are gathered from participating local health departments and indicators of mortality and maternal and child health are obtained from vital records files provided by the National Center for Health Statistics. The most recent report, based upon data for 2005, is entitled “The Big Cities Health Inventory, 2007: The Health of Urban U.S.A

Current Population Survey - U.S. Census Bureau
The U.S. Census Bureau annually reports the most commonly cited state-level estimates of the number of uninsured (see http://www.census.gov/prod/2008pubs/p60-235.pdf  for the most current report). They also report national level-estimates of the uninsured by race, age, gender, and education level. The estimates are based on data collected by the 2008 Current Population Survey (CPS) Annual Social and Economic Supplement (ASEC was formerly called the Annual Demographic Supplement or the March Supplement) conducted by the U.S. Census Bureau. The CPS is the primary source of information on the labor force characteristics of the U.S. population, however, the sample size for some states may be prohibitively small, leading to less reliable estimates of state-level population characteristics. To address this situation, some analysts use a two or three year average to produce more reliable estimates.
Other annual federal surveys that provide estimates of the number of uninsured during a particular period of time include the:

To explain some of the major reasons why estimates of uninsured children from these surveys differ and explore the strengths and weaknesses of each survey, the HHS Office of the Assistant Secretary for Planning and Evaluation released a paper entitled “Understanding Estimates of Uninsured Children: Putting the Differences in Context,”

Health Professional Shortage Areas – Health Resources and Services Administration (HRSA) and State and Territorial Health Departments
Another important data source for assessing access is the national listing of federally designated Health Professional Shortage Areas (HPSAs). The HPSA designation process is based on the ratio of population to primary care physicians. Designation identifies areas with health professional supply deficiencies and is necessary to ensure eligibility for National Health Service Corps placements and several other federal and state programs. Although some feel HPSA designations are limited in utility because they only measure provider supply, when combined with other data on access barriers such as insurance coverage, poverty, language, etc, the HPSA designations represent a key component in measuring access. Designations are coordinated by a partnership between each state’ Primary Care Office (PCO) http://bhpr.hrsa.gov/shortage/pcos.htm and the Division of Shortage Designations at HRSA. A current, searchable listing of federally designated HPSAs is available online.

Medically Underserved Areas & Populations - HRSA and State Health Departments
HRSA also grants Medically Underserved Area/Population (MUA/P) designations to secure eligibility to develop community health centers, federally qualified health centers (FQHC's), FQHC look-alikes, and rural health clinics (RHC's). The federal MUA/P designation identifies medically underserved areas and populations on the basis of demographic data. To qualify for designation the population is scored on the basis of four criteria:

  • Percentage of population below poverty level
  • Percentage of population over 65
  • Infant mortality rate
  • Primary care physicians per 1,000 population

Guidelines for MUA/P designations are available on-line at HRSA’s Shortage Designation Web site and information on both designation processes can be obtained by calling 1-800-400-2742.
Safety Net Monitoring Data and Tools- Agency for Healthcare Research and Quality (AHRQ) AHRQ and HRSA provide data and tools to monitor the health care safety net, which provides health care to low-income and other vulnerable populations. The purpose of this data collection is to aide policymakers and planners in monitoring their safety net and populations served. Data is arranged in several ways, reflecting the variety of sources of safety net services. Book 1, Metropolitan Areas, contains data for 90 metropolitan areas in 30 States and DC, including 354 counties and 171 cities. Book 2, Data for States and Counties, presents data from all 1,818 counties in these States (non-metropolitan and metropolitan counties). Book 3, Tools for Monitoring the Health Care Safety Net provides tools and strategies for state, territorial and local health officials to assess local health care safety nets, including the capacity of their safety net providers and health outcomes for the population served.

The Safety Net Profile Tool an on-line query system, accesses all the data included in the system, combining the information from Book 1 and Book 2. This tool provides step-by-step instructions on how to obtain specific data and how to generate reports that compare multiple measures for one or more geographic areas.

State Health Access Profile - University of Minnesota School of Health Policy
The Division of Health Services Research and Policy at the University of Minnesota School of Health Policy, State Health Access Data Assistance Center (SHADAC) publishes online the State Health Access Profile a collection of 14 health indicators for the 50 states and the District of Columbia. The health indicators provide a broad look at access to care and are arranged in the following categories: Employer markets, public program characteristics, population income, health care networks, and safety net resources. Statistics are shown for each state and are also compared to the national median.

Statistics Sourcebook of Criminal Justice Statistics – U.S. Department of Justice
Because crime has a direct impact on a community’s health, particularly when related to alcohol and drug abuse, the Department of Justice’s Bureau of Justice Statistics brings together data about all aspects of criminal justice in the United States presented in over 600 tables from more than 100 sources. Nearly all the data presented are nationwide in scope and, where possible, they are displayed by regions, states, and cities.

The Social and Health Landscape of Urban and Suburban America - SUNY Downstate Medical Center 
The “Social and Health Landscape of Urban and Suburban America: 1990-2000” profiles the health of the nation’s 100 largest cities and their suburbs. Sponsored by the Robert Wood Johnson Foundation, the project draws data from the U.S. Census Bureau, the CDC and the FBI to provide trends on the health and economic status of urban and suburban America. A series of reports focuses on the relationships and growing commonality of cities and suburbs. The studies examine the relationship of key factors – major population and income changes, recent national welfare and health reforms, and local economic dynamics – with disease and health outcomes, crime and poverty in urban and suburban communities.


Toxics Release Inventory - Environmental Protection Agency (EPA) 
The EPA publishes annually a state-by-state analysis of the Toxics Release Inventory (TRI). The Emergency Planning and Community Right to Know Act (EPCRA) requires the EPA and states to collect data on releases and transfers some toxic chemicals and make this data available to the public in the TRI.

 

NATIONAL ORGANIZATIONS PRODUCING STATE PROFILES
A number of national organizations publish annual “State Health Profiles” that may be helpful in assessing health status and access measures and making comparisons to other states. While many include substantially duplicative data, each has a particular focus or niche that may be helpful for planning purposes. These include:

America’s Health: State Health Rankings
America's Health: State Health Rankings” is produced by the United Health Foundation in partnership with the American Public Health Association (APHA) and the Partnership for Prevention and provides a comprehensive, state-by-state analyses of health status in our nation. This reports methodology is periodically reviewed by a panel of leading public health scholars that weigh the contributions of various factors including, smoking, motor vehicle deaths, high school graduation rates, children in poverty, access to care, disabilities and incidence of preventable disease to a community's health. The report is based on data from the U.S. Departments of Health, Commerce, Education and Labor, the National Safety Council and the National Association of State Budget Officers.

Kids Count
Kids Count is a national and state-by-state project of the Casey Foundation to track the status of children in the United States. At the national level, the principal activity of the initiative is the publication of the annual KIDS COUNT Data Book, which uses the best available data to measure the educational, social, economic, and physical well-being of children state by state. The Foundation also funds a national network of state-level KIDS COUNT projects that provide a more detailed, county-by-county picture of the condition of children.
PeriStats http://www.marchofdimes.com/peristats/: March of Dimes http://www.marchofdimes.com/

The March of Dimes
The March of Dimes maintains PeriStats, an interactive perinatal data resource. PeriStats is a source for maternal, infant and child health-related data at both the state and county level. The PeriStats database uses data compiled from CDC, including NCHS, the National Center for Chronic Disease Prevention and Health Promotion, and the National Center for HIV, STD, and TB Prevention, the Centers for Medicare & Medicaid Services  (CMS), HRSA, the Substance Abuse and Mental Health Services Administration  (SAMHSA), the U.S. Census Bureau, the National Governors Association  (NGA), the United States Department of Agriculture  (USDA) and the March of Dimes .

State by State Health Center Data and Information - National Association of Community Health Centers (NACHC)
NACHC includes data on each state’s community health centers and their patients.

State Health Facts - Kaiser Family Foundation (KFF)
KFF produces state level a Web site entitled “State Health Facts.” This resource contains the latest state-level data on demographics, health, and health policy, including health coverage, access, financing, and state legislation. Information on Medicare, Medicaid, SCHIP, women’s health and minority health is included. These "State Health Facts" are compiled from a variety of data sources and provide a user friendly means for comparing basic health status, access, utilization, and cost measures across states.

State Profiles - The American Association of Retired Persons (AARP) 
AARP provides information and data on over 90 health care-related indicators for each state. The data fall into the general categories of demographics, health status, utilization of services, administration and quality issues, expenditures and financing, available resources, health insurance coverage, and comprehensive and incremental reform of state health care policy. A summary and ordering information is available.

Across the States : Profiles of Long-Term Care  - (AARP)
Across the States presents a snapshot of the long-term care landscape in each state and the District of Columbia. Published, biennially, the series informs policy discussions among public and private sector leaders in long-term care throughout the United States.

YOUTH AND ADOLESCENT DATA
Healthy People 2010 identified approximately 100 health objectives for adolescents and young adults. In addition to individualized state plans to meet these goals, national workgroups were formed, such as the National Initiative to Improve Adolescent Health by the Year 2010 (NIIAH 2010). NIIAH 2010 focuses on 21 critical health objectives affecting young people today and works with government agencies, schools, employers, community-based organizations and others to improve the lives of young adults. The following data sources provide national, state, and local data on a variety of health issues affecting today’s youth and can assist different entities as they work to eliminate health disparities.

Monitoring the Future (MTF) - The National Institute on Drug Abuse (NIDA)
The MTF project, previously known as the National High School Senior Survey, is an ongoing study of the behaviors, attitudes, and values of American secondary school students, college students, and young adults. The study is supported by NIDA and focuses on drug use and abuse (including alcohol and tobacco). The MTF is a repeated series of surveys in which the same segments of the population are presented with the same set of questions over a period of years to see how answers change over time.

National Longitudinal Study on Adolescent Health - National Institute of Child Health and Human Development (NICHD)
The National Longitudinal Study of Adolescent Health (Add Health) is a nationally representative study supported by NICHD. This study examines health-related behaviors in adolescents in grades 7 through 12. Add Health seeks to examine how social contexts (families, friends, peers, schools, neighborhoods, and communities) influence adolescents' health and risk behaviors in early adulthood.

National Youth Tobacco Survey (NYTS) : CDC Office on Smoking and Health
The NYTS, supported by the CDC Office of Smoking and Health and the CDC Foundation, evaluates tobacco use among both high school and middle school students. The survey also measures teen attitudes, behaviors, and knowledge about tobacco use, intent to use, exposure to tobacco use, and exposure to tobacco marketing/advertising.
 

School Health Education Profiles (SHEP) - CDC Division of Adolescent and School Health (DASH)
The SHEP helps state and local education and health agencies monitor the current status of school health education at the middle/junior high school and senior high school levels in their states or districts. The project, supported by CDC’s DASH, assesses school health policies related to HIV infection/AIDS, tobacco use prevention, unintentional injuries and violence, physical activity, food service, physical education, asthma management activities, and family and community involvement in school health programs.

School Health Policies and Programs Study (SHPPS) - CDC Division of Adolescent and School Health (DASH)
The SHPPS is a national survey supported by CDC/DASH used to assess school health policies and programs at the state, district, school, and classroom levels. SHPPS is interested in the coordination and delivery of school health program components, including health education, physical education and activity, health services, mental health and social services, food service, school policy and environment, faculty and staff health promotion, and family and community involvement.

Youth Risk Behavior Surveillance System (YRBSS)
The YRBSS is a national, state and local school-based survey conducted every two years. The national survey, conducted by CDC, provides data representative of high school students in public and private schools in the United States. The state and local surveys, conducted by departments of health and education, provide data representative of the state or local school district. The YRBSS monitors priority health risk behaviors such as tobacco use, unhealthy dietary behaviors, inadequate physical activity, alcohol and other drug use, sexual behaviors, and behaviors that contribute to unintentional injuries and violence.


FEDERAL GOVERNMENT AGENCIES PRODUCING STATE PROFILES


National Women's Health Indicators Database (NWHID) : HHS Office on Women’s Health
The Office on Women's Health (OWH) and the National Women's Health Information Center (NWHIC) has created a comprehensive National Women's Health Indicators Database (NWHID). The NWHID contains extensive national, regional, state, and county data backdated to the year 2000 and will be updated annually. Statistics are available on the following topics: demographics, mortality, access to care, infections and chronic disease, reproductive health, maternal health, mental health, prevention, violence and abuse.

National Oral Health Surveillance System: CDC
CDC in collaboration with the Association of State and Territorial Dental Directors (ASTDD), developed a National Oral Health Surveillance System that offers state specific oral health summaries for the 50 states. Data is available on the following topics: dental visits, teeth cleaning, complete tooth loss, fluoridation status, and contact information for the state dental program.

State Health Workforce Profiles  - HRSA
The HRSA State Health Workforce Profiles compile accurate and current data on supply, demand, distribution, education and use of health personnel. Profiles include estimated numbers of workers and per capita ratios facilitate comparisons with other states and the nation.

State Profiles - HRSA Bureau of Health Professions 
Provides information detailing how federal funds are allocated by state and program.

Title V Information System - HRSA Maternal and Child Health Bureau
The Title V Information System (Title V IS) discussed above allows data to be summarized around a particular theme. The system provides options for summary reports by state on key Title V MCH issues including financial data, program data, national and state performance and outcome measures, and health system capacity indicators. 

Workplace Safety and Health State Profiles - National Institute for Occupational Safety and Health (NIOSH)
The (NIOSH) offers state specific occupational safety and health profiles for the 50 states. NIOSH highlights programs that are beneficial to both workers and employers. Information that is available for each state includes a description of: the burden of occupational illness; the cost of occupational injury; and NIOSH programs that prevent worker injury and diseases.

 
GEOGRAPHIC INFORMATION SYSTEMS

 
GIS and Public Health - CDC National Center for Health Statistics
Provides reports on Public Health and GIS news, maps, and events related to GIS.

Cartographic Archive: Sheps Center for Health Services Research
Many states are beginning to use geographic information systems to visually present health information. There are also a few national resources available which present data graphically for all U.S. counties or health service areas (HSAs). The University of North Carolina's Cecil G. Sheps Center for Health Services Research, for instance, maintains a “Cartographic Archive” which features color coded maps of all U.S. states and most counties presenting data on issues such as the demographics of rural america, health status indicators, rural and critical access hospitals, health professional supply and selected services and programs. 


Reference and Thematic Maps : U.S. Census Bureau
The U.S. Census Bureau’s American FactFinder (AFF) has two tools for creating, viewing, printing, and downloading maps:

  1. Reference Maps - A tool to view the boundaries of census geographies, such as counties, cities and towns, urban areas, congressional districts, census tracts, census blocks, and more.
  2. Thematic Maps - A tool to view census data in graphical format for all geographies - national to individual census blocks. Data are available for Census 2000, the 1990 Census, the 1997 Economic Census, and 2002 Population Estimates.

References:
1 Gold, Marsha and Jill Eden, “Monitoring Health Care Access Using Population-Based Surveys.” Mathematica Policy Research, Inc., Washington, DC. August 1998. Available at http://www.mathematica-mpr.com/PDFs/databrie.pdf.
2 Donaldson, Molla S., et al. Eds. Primary Care: America’s Health in a New Era. Institute of Medicine, National Academy Press, Washington, D.C., 1996.