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Performance Budget Submission for Congressional Justification

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Help for Patients and Consumers of Health Care

Americans are demanding greater value and quality in their health care. To achieve these goals in today's rapidly changing health care environment, consumers need solid, reliable information to help them choose among health care plans, practitioners and facilities, and to participate more actively in their personal health care decisions. AHRQ plays a unique role in helping to provide the information consumers need and want.

Consumer Assessment of Health Plans (CAHPS®)

The Consumer Assessment of Health Plans (CAHPS®) is an easy-to-use kit of survey and report tools that provides reliable information to help consumers and purchasers assess and choose among health plans. Information from CAHPS® surveys was available to help more than 90 million Americans with their 2000 health care benefits decisions. There are CAHPS® data available to nearly 40 million Medicare beneficiaries on 280 plans. These beneficiaries received the assessment of beneficiaries enrolled in managed care plans. Data were provided in the handbook sent to each beneficiary and were placed on the Web site.

Building on previous CAHPS® accomplishments:

  • AHRQ and CMS collaborated with the CAHPS® consortium to develop a Medicare CAHPS® Disenrollee Survey of beneficiaries enrolled in managed care plans that was fielded by CMS in FY 2000. Approximately 80 percent of this survey related to quality. By obtaining the reason for disenrollment, it is possible to distinguish between those that are unrelated to quality (e.g., moving out of the area that the plan serves) and those that are related to quality (e.g., limited access to specialists).
  • In collaboration with the California Health Care Foundation and the Pacific Group on Health, the team has developed a version of CAHPS® to assess care given at the group practice level. This is in response to strong consumer interest in more detailed information about the ability of physicians in group practices to provide high quality care. In CAHPS® II, the team will work on the development of reports to convey survey results to consumers as well as to the group practices which they assessed. An additional goal is to develop strategies for working with physicians to improve areas that consumers identified as troublesome.
  • A partnership between the CAHPS® consortium and the Foundation for Accountability, with support from the David and Lucille Packard Foundation, has led to the development of a CAHPS® survey to identify children with special health care needs and collect additional information on the extent to which health plans are meeting their special health care needs. This tool is already in use by numerous State Medicaid and SCHIP agencies to assist them in meeting the requirements set forth in the 1997 Balanced Budget Act. The NCQA has included this survey as a requirement in the HEDIS reporting set.
  • Continuing to add to the family of CAHPS® surveys, CMS and AHRQ are also collaborating on the development of a CAHPS® survey to obtain consumers' assessments of health and services received in nursing homes. The data, collected from nursing home residents and next of kin, will be used to help persons who are choosing a nursing home. The survey is going through developmental testing to identify the appropriate domains for the survey and prepare the questionnaire and sampling and data collection procedures. This phase was completed in September 2001. Additional testing will be carried out in the next fiscal year.

Grants to continue this work (CAHPS® II) will be awarded in the first part of FY 2002. CAHPS® II will focus on development and testing of new and more effective ways to report quality data to consumers, patients, caregivers, and purchasers and will also translate the questionnaires and reports into languages in addition to Spanish and English. This RFA also includes the development of assessment instruments for people with mobility impairments and more refined questionnaire items for people who receive care through PPO's. As mentioned above, the team will also move in a new direction: working with caregivers and plans to use CAHPS® data for the purpose of quality improvement.

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Identify Strategies to Improve Access, Foster Appropriate Use, and Reduce Unnecessary Expenditures

Adequate access to health care services continues to be a challenge for many Americans. This is particularly true for the poor, the uninsured, members of minority groups, rural residents, and other priority populations. In addition, the changing organization and financing of care has raised new questions about access to a range of health services, including emergency and specialty care. At the same time, examples of inappropriate care, including overutilization and misuse of services, continue to be documented.

Through ongoing development of nationally representative and more specialized databases, the production of public-use data products, and research and analyses conducted by AHRQ staff and outside researchers, the Agency addresses critical policy issues pertaining to the access, cost and use of health care.

Investigator-initiated Research—Impact of Payment and Organization on Cost, Quality and Equity

Health care in the United States is provided within large systems, with complex funding streams. To improve the quality and efficiency of that care, providers, purchasers and policymakers need knowledge about how these systems operate and how different financial and organizational arrangements affect health care.

The IOM report identified a "chasm" between the health care we have and the health care we could have. It also identified that this gap to a large extent springs from two overarching system features:

  • The way we pay for care.
  • The way we structure the organizations that provide it.

AHRQ's FY 2002 research grant portfolio will address questions such as:

  • How do different payment methodologies and financial incentives affect quality, access and cost of care?
  • How can payment arrangements be better designed to provide appropriate incentives to both patients and providers and to enhance patient-centered knowledge of and compliance with treatment regimens?
  • How does consumer and patient decisionmaking influence payment policies?
  • How do different patterns and levels of market competition affect the quality and cost of care? Of particular interest would be the impact of employer and coalition efforts on the quality and cost-effectiveness of care in the marketplace, the impact of State efforts to monitor and improve access and quality, and the impact of public and private payment changes on the health care safety net.
  • What organizational structures and processes are most likely to sustain high-quality, efficient health care?

To address these important issues, AHRQ developed a program announcement in FY 2001 on the effects of payment and organizational structures and processes on the cost, quality, and equity of health care. Important issues to be addressed by this research include:

  • The effects of different payment mechanisms and financial incentives on health care quality, costs, and access.
  • The impact of purchaser and public sector initiatives on quality, costs, and access to health care and health insurance.
  • The organizational structures most likely to sustain high-quality, accessible health care.
  • The impact of different patterns and levels of market competition on health care quality and costs.

Investigator-initiated Grant—Cost-effectiveness Research

Valuation of the EuroQol Group EQ-5D (University of Arizona). Policymakers are expected to make decisions about how best to use limited resources. One of these decisions might be whether limited resources should be spent on a specific medical intervention. Is the intervention "cost effective?" To make a good decision, policymakers should know how much the intervention costs and how the resulting outcome is valued from patients' perspectives.

Researchers at the University of Arizona will collect data about how persons in the U.S. value various outcomes by using the "EQ-5D, a measure of health status that uses 5 dimensions—mobility, self care, usual activities, pain/discomfort, and anxiety/depression. This information has never been collected in a systematic manner in a representative sample of the U.S. population. The researchers will ensure that valid and reliable information will be obtained about the population generally, as well as Hispanics and non-Hispanic blacks, the two largest minority population groups in the United States.

In addition to using this information to analyze changes in individuals' health status, a score can be developed that describes how groups of people value various levels of health status, information that will be highly valuable to policy makers as they strive to provide quality care while containing costs.

Research on Health Care Markets and Managed Care

From a growing, rich body of social science evidence we are learning that market dynamics and delivery system organization not only matter, but are critical determinants of patients' access, quality of care, outcomes and health care costs. Over the last several years, AHRQ's portfolio has given special emphasis to two areas of inquiry, each focusing on particular patient populations: What managed care features improve the quality of care given to patients with chronic conditions? What public insurance program policies and practices improve access to, and the quality of, health care for low-income children?

Each area of inquiry was selected in direct response to decisionmaker needs for information about key market and delivery system determinants and how deliberate or unintended changes in these determinants affect the care of these special populations. In addition to these two foci, AHRQ has supported a broader portfolio related to marketplace complexities and delivery system organization.

Recent accomplishments: To build an evidence base on how best to provide care to the millions of patients with chronic conditions, AHRQ teamed with the American Association of Health Plans Foundation and AHRQ's sister agency, the Health Resources and Services Administration (HRSA), in 1998. A sample of the resulting findings, which are relevant to health plans, purchasers of health plan coverage, and plan enrollees who have chronic conditions, are listed below. Most of these projects will yield final results in the year ahead.

  • The choice of compensation method used by independent practice associations (IPAs) and health maintenance organizations (HMOs) to pay physicians has an impact on quality of care. In a study of over 50 group practices, IPA/HMO payment formulas that capitated ophthalmology group practices and provided bonuses to individual physicians (as opposed to fee for service) were associated with lower satisfaction ratings among patients with diabetic retinopathy and open-angle glaucoma—two leading causes of blindness—than fee-for-service payment formulas.
  • Independent practice association (IPA) networks consistently experienced worse process and outcome quality indicators for patients with chronic heart and lung diseases than more tightly managed medical groups.

To determine how public health insurance programs could improve access to and the quality of health care for low-income children, AHRQ joined with the David and Lucile Packard Foundation and AHRQ's sister agency, HRSA, in 1999 to fund a body of research. The resulting findings, a sample of which is listed below, will benefit State Children's Health Insurance Programs (SCHIP) as well as Medicaid and the children enrolled in them.

  • The method used by SCHIP to periodically redetermine the eligibility of enrollees has an impact on continuity of coverage. State eligibility redetermination requirements for SCHIP enrollees generated large disenrollments in three of the four States that were studied, though up to one-quarter of children returned within 2 months. In the fourth State, a passive re-enrollment policy eliminated excess disenrollment at the point of eligibility redetermination.

For each of these portfolios of findings, AHRQ has developed a coordinated and creative package of dissemination strategies tailored to the relevant user groups. Strategies include targeted briefings, conference presentations, mailings, web postings and publications.

Integrated Delivery System Research Network (IDSRN)

Improving care practices and collecting evidence about what works and what does not work in our largely private health care system requires use of private-sector data and partnerships between researchers and providers of care. Private-sector databases are not generally accessible to most of the scientific research community. The Integrated Delivery System Research Network (IDSRN), a new model of research developed this past year, links the Nation's top researchers and some of the largest health care systems with AHRQ. In so doing, it enables AHRQ researchers to conduct studies and collect information available only in the private sector to address HHS' public policy priorities and develop evidence that health system leaders can use to improve care.

The IDSRN comprises nine partner organizations that provide care to over 50 million Americans, including privately insured patients, Medicare and Medicaid patients, the uninsured, ethnic and racial minorities, and rural and inner-city residents.

AHRQ funded 16 projects in 2001, with timelines that range from 12 to 18 months. Eleven of these projects focus on improving patient safety and working conditions for health care workers, and five focus on reducing disparities in health care delivery. Specifically, the researchers will:

  • Examine ways to improve the care delivered to women, children, minority populations, and patients with limited English proficiency. This will enhance the capacity of health plans and health care delivery systems to identify and address disparities in health care delivery within their populations.
  • Identify and test ways to improve patient safety and working conditions in a variety of care settings, and identify ways that successful strategies can be adopted in different organizational systems. This will provide health system managers and purchasers with the evidence they need to design and implement strategies to reduce errors in diverse settings.

Select for the IDSRN Fact Sheet.

HIV Research Network

Swift changes in treatment regimens resulting from continuous drug therapies are having a profound effect on resource use by people with HIV infection. Medicaid, Medicare, the Department of Veterans Affairs, and the Ryan White CARE Act spend more than $9 billion each year to treat people with HIV disease. Yet, because change is occurring so quickly, data that were collected as recently as 3 years ago do not reflect the current situation and cannot be used reliably for policy and planning purposes.

In 1999, AHRQ joined with the Substance Abuse and Mental Health Services Administration (SAMHSA), the Health Resources and Services Administration (HRSA), and the Department's Assistant Secretary for Policy and Evaluation (ASPE) to establish a pilot HIV data center at the Johns Hopkins School of Medicine.

The goal was to collect current information about a large number of individuals who have HIV disease from providers who specialize in HIV care and build a set of associated, publicly available databases about the characteristics of patients and the care they receive. Although the HIV Research Network produces real-time information about access, costs, and quality of care, its databases will not include any patient or provider identifiers.

In 1999, researchers at the data center tested on a small scale the feasibility of transmitting data from HIV caregivers. These included data on patient characteristics, payer data, clinical data, and data on the number of visits and admissions. In FY 2000 the pilot was deemed successful and NIH's Office of AIDS Research joined the collaboration, and efforts were expanded to collect data from 20 to 30 providers who treat at least 20,000 people with HIV disease. Preliminary data analyses indicate that there are serious disparities among people with HIV disease in their ability to receive expensive new drug therapies. Specifically, analyses show:

  • Black women covered by Medicaid are less likely than other patients to receive new and expensive drug therapies.
  • White patients are more likely than black or Hispanic patients to receive new therapies.
  • Medicaid patients are less likely than privately insured patients to receive new drugs.

In FY 2001, based on the promising results from the pilot project, AHRQ initiated a contract to continue the project through FY 2005.

The HIV Research Network provides an ongoing means to collect timely information on resource use associated with HIV disease. It is a cost-effective way to obtain reasonably complete medical and financial information on a large number of HIV-infected patients, thus facilitating research on HIV care among different types of patients. Future plans include enrolling several new pediatric sites to examine access to care for children with HIV, as well as the costs and quality of care they receive. In addition, the HIV Research Network plans to conduct interviews with patients at each site to acquire information about their compliance with medication dosages and their access to mental health and substance abuse services.

Healthcare Cost and Utilization Project (HCUP)

The unprecedented volume and pace of change in the U.S. health care system, and the fact that changes are not occurring uniformly across the country, require a new information standard. We at AHRQ have long recognized the need for scientifically sound, standardized databases and tools for using them, as well as the need to make these resources available at the national, regional, and State levels. The Healthcare Cost and Utilization Project is one of many ways in which AHRQ is addressing this need.

HCUP is a Federal-State-industry partnership to build a standardized, multi-State health data system. This long-standing partnership has built and continues to develop and expand a family of administrative databases and powerful, user-friendly software to enhance the use of administrative data.

Included in HCUP is hospital discharge information from State-specific hospital and ambulatory surgery databases, as well as a national sample of discharges from community hospitals. HCUP data are used at all levels to inform decisionmaking. HCUP continues to be a very valuable resource in light of recent findings that about 40 percent of personal health care expenditures in the United States go towards hospital care—making it the most expensive component of the health care sector.

FY 2001 accomplishments include increasing the number of States participating in HCUP; now half (29) of all States are HCUP partners, an increase of roughly 15 percent over the previous fiscal year. New State partners were selected based on their diversity—in terms of geographic representation and population ethnicity—they bring to the project, along with data quality performance and their ability to facilitate timely processing of data.

AHRQ also expanded HCUP beyond inpatient hospital settings to include hospital-based State Ambulatory Surgery Databases (SASD). The number of States participating in the SASD increased from 9 in FY 2000 to 13 in FY 2001.

Additionally, a pilot of emergency department databases was expanded from one to five States. The State Emergency Department Databases (SEDD) capture hospital-affiliated emergency department encounters from data organizations in participating States.

AHRQ recently announced the availability of the Kids' Inpatient Database (KID), the first comprehensive research database exclusively concerned with inpatient care of children and adolescents in the Nation's community hospitals. The KID is the only dataset on hospital use, outcomes, and charges for children age 18 and younger, including newborns, regardless of whether they are privately insured, receive public assistance, or have no health insurance. The KID contains national estimates for 6.7 million pediatric discharges and data on various hospital characteristics such as region, location (urban/rural), size, ownership, and pediatric hospital status.

During the past year AHRQ began a multifaceted effort to make HCUP data more accessible to researchers and other interested users. A centerpiece of this effort is HCUPnet, a free, interactive, menu-driven online service that allows easy access to national statistics and trends and selected State statistics about hospital stays.

HCUPnet answers questions about conditions treated and procedures performed in hospitals for the population as a whole, as well as for subsets of the population such as children and the elderly. In addition, 10 States have agreed to include their data in HCUPNet. About 4,000 visits are logged each month on HCUPnet.

A second key component of our effort to facilitate researchers' access to HCUP data is the creation of a central distribution center for the State-level databases. Now researchers can go one-stop shopping instead of contacting each State on an individual basis.

  • Data from HCUP have been used to produce reports that answer questions on reasons Americans are hospitalized, how long they stay in the hospital, the procedures they undergo, how specific conditions are treated in hospitals, and the resulting outcomes. In FY 2001, AHRQ launched an HCUP fact book series that is disseminated in print and through the AHRQ Web site. These fact books were downloaded nearly 40,000 times in the first 6 months after they were posted on the Agency's Web site.

State Inpatient Databases (SID). The SID comprise non-Federal hospital discharge data from the participating States (see below), which represents about 67 percent of the over 22 million inpatient discharge abstracts in the United States.

New York
North Carolina

West Virginia

South Carolina

New Jersey

Nationwide Inpatient Sample (NIS). The NIS is the largest all-payer inpatient database in the United States. It provides information on about 7 million inpatient discharges from about 1,000 hospitals, including data from 1988-1999. According to NIS data:

  • About 135,000 hospital stays a year for treatment of depression, and alcohol- and substance-related mental disorders are not covered by either private insurance or public insurance programs such as Medicare and Medicaid.
  • Childbirth is the leading type of hospital care not covered by private insurance or public coverage. About 5 percent of all hospitalizations for childbirth—roughly 191,000 hospital stays a year—are uninsured.
  • Two chronic diseases, which if appropriately treated in primary care practices do not ordinarily result in hospitalization, also are among the top 10 types of uninsured inpatient care—asthma and diabetes. Together they account for 65,000 hospital admissions a year.

Examples of information provided in the HCUP fact books include:

  • The top five reasons for hospital admission are births, coronary arteriosclerosis, pneumonia, congestive heart failure, and heart attack.
  • Organ transplantation is associated with some of the longest and most expensive hospital stays.
  • Over one-third of all hospital admissions are through the emergency department.
  • The average charge for a hospital stay is over $110,000, and the average length of hospital stay is about 5 days.

Medical Expenditure Panel Survey (MEPS)

The Medical Expenditure Panel Survey (MEPS) is an annual (1996 to present) nationally representative survey of health care use, expenditures, sources of payment, and insurance coverage for the U.S. civilian noninstitutionalized population. The 1996 MEPS also included a national survey of nursing homes and their residents.

This survey is AHRQ's main source to collect and examine 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. Additional details regarding MEPS can be online at

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