Agency for Healthcare Research and Quality




AGENCY/PROGRAM: Center for Quality Improvement and Patient Safety, Agency for Healthcare Research and Quality

DESCRIPTION: CAHPS provides an easy-to-use kit of survey and report tools that provides reliable and valid information to help consumers and purchasers assess and choose among health plans. The kit contains a set of questionnaires to ask consumers about their experience with their health plans, sample formats for reporting results to consumers (in print and computer versions), and a handbook with instructions for conducting the CAHPS surveys and producing CAHPS reports.

CAHPS is designed to:

  • Focus on information that consumers want when choosing a plan and present this information in easily understood formats.
  • Address consumers' needs for more detailed information by covering specific plan features such as access to specialists, quality of patient/physician interaction, and the coordination of care.
  • Include questions that are targeted to persons with chronic conditions or disabilities, children, and Medicaid and Medicare beneficiaries.
  • Provide standardized questionnaires for assessing experience across different populations and care delivery systems.
  • Contribute to quality improvement (QI) initiatives sponsored at the health plan, provider group, and provider levels of the health care delivery system.
  • Improve the utility and value of the survey questions through a combination of cognitive, psychometric, and other field testing that enhances the reliability and thus the comparability of results across different plans and population groups.

RACE AND ETHNICITY: CAHPS has been translated into a Spanish version which has been field tested with Spanish-speaking Medicaid enrollees in Washington and Oregon. Spanish language reports are also in development. A goal of CAHPS II is to improve cultural comparability and appropriateness of CAHPS surveys and reports. Race/ethnicity categories are: White; Black or African American; Asian; Native Hawaiian or Other Pacific Islander; American Indian or Alaska Native; Other.

STATUS: The kit is a product of a project begun in October 1995. It is now in Phase II, and will be further tested and refined through Spring 2006. Surveys and reports for group practice, individual provider, nursing homes and hospitals are under development.

HOW TO ACCESS DATA: Requests for the CAHPS Survey and Reporting Kit are handled through the CAHPS Survey Users Network Web site at

WEB SITE: The CAHPS Survey and Reporting Kit can be accessed through the CAHPS Survey User Users Network Web site at

CONTACT PERSONS: Christine Crofton
Co-Project Officers for CAHPS
Center for Quality Improvement and Patient Safety
Agency for Healthcare Research and Quality
6011Executive Boulevard, Suite 200
Rockville, MD 20852
(301) 594-2050 / fax (301) 594-2155


TITLE: Healthcare Cost and Utilization Project


AGENCY/PROGRAM: Center for Organization and Delivery Studies, Agency for Healthcare Research and Quality

DESCRIPTION: The Healthcare Cost and Utilization Project (HCUP) is a family of healthcare databases and related software tools and products developed through a Federal-State-industry partnership and sponsored by the Agency for Healthcare Research and Quality (AHRQ). HCUP databases 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. HCUP would not be possible without the cooperative efforts of statewide data organizations.

HCUP includes the largest collection of longitudinal hospital care data in the United States, with all-payer, encounter-level information for the years 1988 - 2000. These databases enable research on a broad range of health policy issues, including cost and quality of health services, medical practice patterns, access to health care programs, and outcome of treatment at the national, State, and local market levels.

HCUP databases contain encounter-level information compiled in a uniform format with privacy protections in place. The 2000 Nationwide Inpatient Sample (NIS) contains all discharge data from 994 hospitals located in 28 States, approximating a 20-percent stratified sample of U.S. community hospitals. The State Inpatient Databases (SID) contain the universe of the inpatient discharge abstracts from hospitals in participating States. Together, the SID files represent more than 80% of all U.S. hospital discharges. The State Ambulatory Surgery Databases (SASD) contain information on surgeries performed on the same day in which patients are admitted and released. The Kids' Inpatient Database (KID) is the only hospital administrative dataset designed specifically to assess neonates', children's, and adolescents' use of hospital services. The KID enables studies of specific conditions, procedures, and subpopulations that often cannot be assessed with other databases because children account for a relatively small proportion of hospital stays.

HCUPnet is a free on-line interactive tool available at Information in HCUPnet can be utilized for identifying, tracking, analyzing, and comparing statistics on hospital care. HCUPnet queries generate statistics in a table format using data from the NIS, KID, and SID databases for those States that have agreed to participate.

RACE AND ETHNICITY: Because of differences in the coding of race/ethnicity across the state data systems that provide data to HCUP, the following race/ethnicity categories have been employed: (1) White, (2) Black, (3) Hispanic, (4) Asian or Pacific Islander, (5) Native American, (6) Other. About half of the states supplying data for HCUP provide complete reporting of race/ethnicity on their data.

STATUS: The project is ongoing.

HOW TO ACCESS DATA: NIS, SID, SASD and KID databases are available for purchase through the HCUP Central Distributor under the auspices of the Agency for Healthcare Research and Quality (AHRQ). HCUP databases exclude data elements that are considered directly identifiable under the HIPAA Privacy Rule. Access to the files is open to users who sign a Data Use Agreement. Users must agree to use the database for research and statistical purposes only and to make no attempts to identify individuals.

CONTACT: Information on HCUP databases, software, and other products is available online at Comments or questions may be sent by e-mail to

For ordering information please contact:

HCUP Central Distributor
Social and Scientific Systems
8757 Georgia Ave., 12th Floor
Silver Spring, MD 20910
Phone: (866) 556-4287 (toll-free)
Fax: (301) 628-3201


TITLE: HIV Cost and Services Utilization Study


AGENCY/PROGRAM: Center for Cost and Financing Studies, Agency for Healthcare Research and Quality

DESCRIPTION: HCSUS is the first major research effort to collect information on a nationally representative sample of people under care for HIV infection. It is funded through a cooperative agreement between the Agency for Healthcare Research and Quality (AHRQ) and RAND. Funding for the HCSUS comes from AHRQ with supplemental funding from a number of other government agencies and the private sector. HCSUS is being conducted by a consortium of research institutions centered at RAND. Local and national advisory groups were established to facilitate communication with the HIV community and the research consortium.

HCSUS collected data on over 2,864 HIV positive persons in clinics, hospitals and private practices in 28 urban areas and six clusters of rural counties in the United States. Through baseline interviews, follow-up interviews and abstraction of medical, financial and pharmacy records, HCSUS provides information on cost and use of medical care; unmet needs for care, health-related quality of life, social support, knowledge of HIV, clinical outcomes, mental health, oral health, and drug use.

RACE AND ETHNICITY: No racial or ethnic groups have been excluded from the sample. The sample is sufficiently large to make accurate estimates for Blacks.

HCSUS asks respondents whether they are 1) White or Caucasian; 2) Black or African American; 3) Hispanic or Latino; 4) American Indian or Alaskan Native; or 5) Asian or Pacific Islander. If the respondent volunteered "mixed race," then he or she was asked "what are your main racial or ethnic groups" and the respondent could specify any of the five categories above (multiple responses permitted).

STATUS: Data collection has been completed.

HOW TO ACCESS DATA: Data from the three waves of interviews with HIV-positive patients are available for public use. Prospective users must complete a Data Use Agreement. Copies of the Agreement can be obtained from the Contact Person.

WEB SITE: RAND ( maintains a web site that contains information about HCSUS (

CONTACT PERSON: Doris C. Lefkowitz, Director, Division of Survey Operations
Center for Cost and Financing Studies
Agency for Healthcare Research and Quality
2101 East Jefferson Street
Rockville, MD 20852
(301) 594-1406


TITLE: Medical Expenditure Panel Survey -Household and Medical Provider Components


AGENCY/PROGRAM: Sponsoring Organizations--Agency for Healthcare Research and Quality (AHRQ)/ National Center for Health Statistics (NCHS)

DESCRIPTION: The primary objective of the MEPS is to provide annual nationally representative estimates of health care use, health care expenditures, sources of payment, health insurance coverage, and health status for the U.S. civilian noninstitutionalized population.

The MEPS survey collects continuous longitudinal data from a nationally representative sample of households through an overlapping panel design in which a new sample is introduced at the beginning of the calendar year and is followed for two consecutive years. MEPS draws its initial sample from the National Health Interview Survey (NHIS) sampling frame and continues to collect additional data on respondent's health care expenditures. These data are then linked with additional information collected from the respondent's medical providers, employers, and insurance providers. MEPS include three major survey components: the Household Component (HC), the Medical Provider Component (MPC), and the Insurance Component (IC). The HC is the core survey, and it forms the basis for the MPC sample and part of the IC sample. A separate Nursing Home Component supplements the other MEPS components.

  • Household Component--Data for the MEPS Household Component (HC) are collected using personal interviews in households. Based on the person-level and family-level information for the calendar year, the following data are obtained: health care use, expenditures, sources of payment, insurance status, functional limitations and disabilities, restricted activity days, access to care, and acute and chronic conditions. The 1996 MEPS sample was selected from respondents to the 1995 National Health Interview Survey (NHIS). The 1996 MEPS sample was a multistage probability sample, which consisted of approximately 10,500 households and 23,00 individuals. The new design of the MEPS called for an annual expenditure survey each year subsequent to 1996. For 1997, a new nationally representative panel of households selected from the 1996 NHIS was drawn to supplement the 1996 panel. The 1997 MEPS includes an oversample of individuals with functional limitations, children with limitations in activities, individuals with incomes less than 200 percent of the poverty level and individuals predicted to incur high levels of medical expenditures. The 1997 MEPS sample consists of approximately 12,600 households, 34,000 individuals with complete data for calendar year 1997. In calendar year 1998, the MEPS sample will return to 10,500 households and 23,000 persons. The annual MEPS panel surveys will maintain these sample peaks every five years.
  • Insurance Component--The MEPS Insurance Component (IC) is an annual panel survey that collects data on health insurance plans obtained through employers, unions, and other sources of private health insurance. Information on premiums, deductible and co-payment provisions, distribution of premium costs across payers, and health insurance options are linked to the household sample. Sampled participants in the MEPS IC are selected through four sampling frames. Each year the sample includes approximately 7,000 establishments identified through the MEPS HC; 27,000 establishments identified through a Bureau of the Census list frame of private sector businesses; 1,900 government employers identified from the Census of Governments from Bureau of the Census; and 1,000 persons identified through an Internal Revenue Service list of the self-employed. Data are collected from the selected organizations through a prescreening telephone interview, a mailed questionnaire, and a telephone follow-up for nonrespondents.
  • Medical Provider Component--Expenditure data for MEPS are obtained through the Medical Provider Component (MPC) from medical providers who provided care to HC respondents. This survey assists in reducing nonresponse bias associated with item nonresponse in the MEPS HC. The sample for the MPC consists of a targeted selection of providers identified during the HC interview. This includes all hospitals and hospital identified physicians, home health providers, and pharmacies reported in the HC. Also included in the MPC are all office-based physicians providing care for HC respondents receiving Medicaid, office-based physicians associated with a 75-percent sample of households receiving care through health maintenance organization or managed care plans, and those associated with a 25-percent sample of the remaining households. The 1996 sample is projected to provide data from approximately 2,700 hospitals, 12,400 office-based physicians, 7,000 separately billing hospital physicians, and 500 home health providers. The MPC is conducted through telephone interviews and mailed survey materials.

RACE AND ETHNICITY: The MEPS HC collects household reported data on race/ethnicity. Race and ethnicity are asked about separately in independent questions. In addition to race, it is ascertained whether or not each respondent is Hispanic. Race classifications include American Indian, Aleut, Asian, Black, White, and other. Since the MEPS uses the NHIS as a sampling frame, there is an oversample of blacks and Hispanics in the sample allowing for in depth analysis of these sub groups. Analysis of other subgroups is dependent on having an adequate sample size in any given year.

STATUS: Ongoing longitudinal data collection will continue. A series of data findings and highlights will be released on the MEPS web site as completed. Survey reports and analysis articles will be published in professional journals. As data are collected and edited, public use data files will be released.

HOW TO ACCESS DATA: The current schedule for releasing MEPS HC public use data files is:

  • Spring 1997 - person-level Round 1 demographics, employment, health status, health insurance status. (Currently available as MEPS HC-001: 1996 Panel Round1 Population Characteristics, March 1997, AHRQ Clearinghouse Number: 97-DP20).
  • Fall 1997 - person-level children's health status, HMO indicators, and access and satisfaction with health care (Currently available as MEPS HC-002: 1996 Round 1 parent identifiers and managed care data and Round 2 health status and access to care data, AHRQ Clearinghouse Number: 98-DP01).
  • Fall 1998 - person-level full-year heath cares utilization (Currently available as MEPS HC-003, 1996 Panel Population Characteristics and Utilization Data for 1996. AHRQ Clearinghouse number 98-DP12).
  • Spring 1999 - person-level full-year health care utilization, source of payment for health care charges, expenditures, health insurance, health conditions, and income.

WEB SITE: All MEPS public use data files and publications can be down loaded from the MEPS home page at For copies of data products and reports, see the MEPS section of the AHRQ home page at or contact the AHRQ Publications Clearinghouse at 1-800-358-9295.

CONTACT PERSON: Karen Beauregard
P.O. Box 8547
Silver Spring, MD 20907
(301) 594-1406


TITLE: Medical Expenditure Panel Survey Nursing Home Component


AGENCY/PROGRAM: Sponsoring Organization-Agency for Healthcare Research and Quality (AHRQ) and National Center for Health Statistics (NCHS)

DESCRIPTION: The primary objective of the MEPS NHC is to develop person-level estimates of functional status, health care use, and expenditures for the U.S. population residing in nursing homes and facility-level estimates of nursing home characteristics, services, and expenses.

MEPS NHC is a year-long panel survey of nursing homes (NH) and of persons residing in or admitted to a nursing home at any time during calendar year 1996. Data were collected from NH sources and next-of-kin through in-person and telephone interviews, respectively. At the person-level, information was obtained on: nursing home use, expenditures and sources of payments; residences history, including admission/discharge dates and inpatient hospital stays; health status and current diagnoses; prescribed medicine and other medical provider use while resident in the NH; and demographic characteristics, including income and insurance coverage. At the facility level, information was obtained on facility size, ownership, certification status, services provided, revenues and expenses, and other characteristics of nursing homes.

The sample design is a two-stage stratified probability design, which selected facilities from the National Health Provider Inventory in the first stage and selected persons (a sample of January 1, 1996 residents and a sample of 1996 admissions) in the second stage. Respondents included approximately 800 facilities, 3,100 persons sampled as a January 1, residents, and 2,200 persons sampled as admissions. Together the samples represent a sample of persons who used a NH any time during 1996.

RACE/ETHNICITY: The MEPS Nursing Home Component collects the following race data: American Indian and Alaskan Native; Asian or Pacific Islander; Black; White; and Other. A separate question asks if the NH resident is of Hispanic ethnicity. Data are obtained from patient records and next-of- kin.. Because of small sample sizes, analyses can not be conducted on the following sub-population groups: American Indian and Alaskan Native; Asian or Pacific Islander, and Other Races (a sample size of least 100 persons is required for reliable estimates).

DATA LIMITATIONS: Income and assets data have a high rate of imputation for item missing data. Facility revenues and facility expenses have a high rate of missing data without imputations.

STATUS: A series of data findings reports, chart-books and methodological reports, have been released and are available on the MEPS web site. Other analysis have been presented at professional meetings and published in professional journals. Analyses are on-going. At the present time, there are no plans to repeat the MEPS NHC.

HOW TO ACCESS DATA: Because of confidentiality concerns, the MEPS NHC data files are only available through the CCFS Data Center (see ). Data file documentation and associated questionnaires for the MEPS NHC are posted on the MEPS web site. MEPS NHC data products are distributed free of charge by AHRQ.

WEB SITE: All MEPS NHC publications, file documentation, questionnaires, and information on accessing the Data Center are posted on the MEPS web site at: Copies of publications and reports can also be obtained from the AHRQ Publications Clearinghouse at 1-800-358-9295.

CONTACT PERSON: Jeff Rhoades or D.E.B. Potter
P.O. Box 8547
Silver Spring, MD 20907
(301) 594-1406

TITLE: Medical Expenditure Panel Survey - Insurance Component


AGENCY/PROGRAM: Sponsoring Organization - Agency for Healthcare Research and Quality (AHRQ)

DESCRIPTION: The primary purpose of the MEPS-IC survey is to collect information from employers on the availability, cost, and scope of health insurance benefits offered to their employees. The MEPS-IC survey is an annual survey with data collected from employers for the prior year. Data are available for each year beginning with 1996. Data are collected through prescreening telephone interviews, mailed questionnaires, computer-assisted telephone follow-up interviews for nonrespondents, and some personal visits as needed.

The MEPS-IC survey consists of approximately 38,000 sample cases from the Census Bureau's private-sector establishment frame, 2,000 sample cases from the Census Bureau's Census of Governments frame, and 8,000 cases from the MEPS-HC survey. The MEPS-HC cases are those employers identified by MEPS-HC respondents as their primary employers and/or source of health insurance.

RACE/ETHNICITY: Not Applicable.

DATA LIMITATIONS: Data from the MEPS-IC survey are confidential. The private-sector and government sample databases are Census Bureau confidential and can only be accessed through the Census Bureau's Research Data Centers. Data from the MEPS-HC survey cases are AHRQ/NCHS confidential and can only be accessed through the CCFS Data Center at AHRQ.

STATUS: This annual survey is still in process. Tables of State and National estimates from the private-sector and government samples of the MEPS-IC survey are available on the MEPS website for years 1996 through 2000. Tables and databases are released each August. Survey data for 2001 will be released in August 2003.

HOW TO ACCESS DATA: All MEPS-IC tables are released on the MEPS website In addition to these tables of national and State estimates, MEPS produces an on-line statistical tool (MEPSnet/IC) that locates desired estimates from the tables and displays them in graphical format for all available years. MEPS also produces Statistical Briefs, Findings, Chartbooks, and Methodology Reports on this survey. For copies of data products and reports, see the MEPS section of the AHRQ home page at or contact the AHRQ Publications Clearinghouse at 1-800-358-9295.

MEPS-IC databases can not be released to the public, however they can be made accessible to persons with approved projects. Information on accessing the data through the Census Bureau Research Data Centers or the CCFS Data Center (depending on the data of interest) are also available on

CONTACT PERSON: Doris C. Lefkowitz
Director, Survey Operations
Center for Cost and Financing Studies

TITLE: HIV Research Network


AGENCY/PROGRAM: Agency for Healthcare Research and Quality, Center for Organization and Delivery Studies and Center for Cost and Financing Studies

DESCRIPTION: The data come from the HIV Research Network, which is composed of 18 medical institutions treating more than 12,000 HIV patients in 11 states from New York to California, and from Florida to Michigan. The HIV Research Network is supported by AHRQ in conjunction with the HIV/AIDS Bureau of the Health Resources and Services Administration, the Center for Substance Abuse Treatment of the Substance Abuse and Mental Health Services Administration, and the Office of AIDS Research of the National Institutes of Health. Data include information on inpatient and outpatient service utilization, as well as information on clinical status (e.g., CD4 and viral load measures).

RACE/ETHNICITY: Caucasian, African/American, Hispanic, and Other

DATA LIMITATIONS: The HIV research network was designed to collect data longitudinally in order to assess trends in HIV-related resource utilization over time. The goal is a timely collection and analysis of data. Although sites in the sample were not selected by a statistically derived algorithm, the large number of patients it includes, the broad geographic distribution of involved sites, and the similarity of our findings to those of a national probability sample of HIV patients in care (HCSUS), are all consistent with results being a reasonably accurate picture of HIV care in the U.S. However, the reliance on sites that specialize in providing HIV primary care may limit the generalizeability of the findings. The HIVRN does not collect data from sites in which HIV-infected persons are cared for by non-HIV specialist providers or in rural sites. Nonetheless, the growing complexity of HIV directs most HIV-infected persons to HIV specialty care providers.

STATUS: Data are collected on a yearly basis. At this time, data for the year 2000 have been collected from all participating sites, and data from 2001 have been collected about half of the participating sites.

HOW TO ACCESS DATA: Tabular calculations using the data may be accessed from the AHRQ website.


CONTACT PERSONS: Fred Hellinger and John Fleishman