Part 1. AHRQ Activities and Accomplishments, FY 2001

AHRQ and Health Care Today

In the first decade of the 21st century, the Nation faces critical challenges in health care. A combination of unprecedented advances in health care treatments and rapidly increasing health care costs requires the use of scientific evidence to assure that those most likely to benefit receive effective services and that the return on our investment in health care results in improved health.

Research on these and other pressing issues is at the center of the mission of the Agency for Healthcare Research and Quality. Our goal at AHRQ is to support and conduct research that addresses and anticipates health care challenges facing policymakers, health system leaders, clinicians, patients, and families. These challenges include quality of care, patient safety, access to effective care, and the costs of care.

The first section of this report presents information on the programs and activities undertaken by AHRQ in FY 2001 and provides examples of some recent accomplishments. The second section of the report presents financial statements and detailed information about AHRQ's resources and expenditures.

To set the stage for this discussion, this report presents information about the state of health care in America today and describes the role AHRQ can play in addressing some of the most important challenges and questions facing the Nation's health care system in these first few years of a new century. The report also presents AHRQ's organizational structure and key responsibilities of functional components, describes the Agency's National Advisory Council, and identifies the various audiences and customers who use the findings from Agency-supported research.

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Addressing Health Care Challenges

Today, we are looking for answers to deal with escalating health care costs, a vulnerable population of uninsured Americans, continuing difficulties with access to care for some people, and disparities in care and outcomes, related not only to insurance but also to race, sex, age, health status, and geographic location.

Findings from AHRQ's Medical Expenditure Panel Survey (MEPS) and Healthcare Cost and Utilization Project (HCUP), as well as other sources, provide a snapshot of health care in America today. For example:

Health Care Costs

• Approximately 84 percent of the U.S. community population has at least some medical expenses during a year. In 1998, the average expense per person for those individuals was just over $2,400.
• Overall, most expenses for the community population are covered by private insurance. In 1998, for example, about 39 percent of all expenditures for people living in the community were paid by private insurance.
• Approximately one-fifth of expenses for the community population are paid out-of-pocket. In 1998, for example, about 19 percent of all expenditures for this population were paid out-of-pocket, 24 percent were paid by Medicare, and 9 percent were paid by Medicaid.
• In 1998, only 56 percent of the uninsured community population had any medical expenses, compared with 87 percent for those with private insurance. Medical expenditures for the uninsured also are substantially lower than for the insured and are largely, but not exclusively, paid out-of-pocket.
• The distribution of medical expenditures is highly skewed: 1 percent of the population accounts for more than 25 percent of all expenses, and 5 percent of the population accounts for more than half of the total.

Health Insurance

• Today, about 16 percent of Americans are uninsured.
• More than 33 percent of young adults aged 19 to 24 are uninsured.
• As of 2000, about 3.3 million uninsured children were enrolled in the State Children's Health Insurance Program (SCHIP).

Resource Use

• Each year, three of every four Americans receive outpatient care from a medical provider.
• About 7 percent of the U.S. population has at least one hospital stay during the year. In 1998, about 5 percent of children birth to age 4 had a hospital stay.
• In 1998, about one in five U.S. children from birth to age 4 did not have an office-based doctor's visit.
• Health care use estimates are highest for elderly people, people in poor health, and those who die during a year.

Access to Care

• Nearly 18 percent of the population has no usual source of care.
• Hispanic Americans and young adults are more likely than others to be without a usual source of care.
• Almost 12 percent of families have members who experience difficulty or delay in obtaining health care or do not receive needed care.
• Declines in health insurance coverage are responsible for only one-fifth of the declines in access to care, meaning that increasing health insurance coverage alone will not be enough to eliminate problems in accessing care.

Health Care Disparities

• Women are less likely than white men to be referred for kidney transplants.
• Blacks are much less likely than whites to receive therapeutic procedures for several common cancers such as cancer of the colon, bladder, cervix, and breast.
• Minorities are more likely than whites to say their health status is "fair." Nearly 17 percent of Hispanic women and more than 15 percent of black women say they are in fair or poor health, compared with 11 percent of white women.
• Women of color have higher rates of high blood pressure, tend to develop it at an earlier age, and are less likely than white women to receive treatment for it.
• Minority women, particularly black women, are at relatively high risk for giving birth to low birthweight infants, both prematurely and at term. Maternal and infant deaths among black women are 5 and 2.5 times greater, respectively, than the national average.
• Black women have a higher incidence of fibroids, larger and more numerous fibroids when first diagnosed, and a higher rate of hysterectomies than women of other races. Yet black women are more likely than white or Hispanic women to have their fibroids surgically removed through a myomectomy, a procedure that preserves the uterus.

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Role and Mission of the Agency for Healthcare Research and Quality

AHRQ at a Glance Budget: $270 million in FY 2001 Staff: 292 Director: John M. Eisenberg, M.D., M.B.A. Deputy Director: Lisa Simpson, M.B., B.Ch., M.P.H.

The Agency for Healthcare Research and Quality is recognized as the Federal agency uniquely positioned to address the health care challenges we face today. The health services research supported and conducted by AHRQ is different from but complementary to the research performed in laboratories. The data gathered for AHRQ-funded health services research comes from:

• People receiving the care and the clinicians and systems providing the care.
• Employees enrolled in health plans (to help measure and improve patients' experiences with care).
• Hospital records and administrative data provided by States working together to obtain detailed information about the health care people receive.
• Clinicians who meticulously examine and evaluate hundreds of research articles to synthesize the information for clinicians and patients. The results enhance access to relevant evidence for making effective clinical decisions.

Health services research completes the work begun in the laboratory. Health services researchers strive to answer the central question: "Does this work in daily practice with real people whose characteristics, needs, and local communities are different?"

Rapid changes in the financing and organization of health care, changing characteristics and health care needs of the U.S. population, and the proliferation of new health care services make the need for high-quality health services research more critical than ever. The future of the field and the vision for health services research come from the scientific community—investigators who are on the front lines of the clinical, health system, and health policy problems that are waiting to be resolved through health services research. The nurturing of novel research approaches, concepts, and directions is central to AHRQ's mission, and it is essential to providing effective health care in the Nation.

AHRQ supports and conducts health services research on: Outcomes. Quality of Care. Patient safety. Costs of care. Use of services. Access to Care.

The mission of the Agency for Healthcare Research and Quality is to support, conduct, and disseminate research that improves the outcomes, quality, access to, cost, and use of health care services and enhance patient safety. The goal is to ensure that the knowledge gained through health care research is translated into measurable improvements in the health care system and better care for patients. The products of the Agency include knowledge that supports decisionmaking to improve health care, as well as research-based tools that can help improve quality and reduce costs. For more information on AHRQ's organizational structure and how the Agency functions, go to the appendix at the back of this report.

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AHRQ's Customers

AHRQ's customers are decisionmakers who need objective, evidence-based, and timely information to make informed decisions about the health care they provide, receive, and purchase. These customers include clinical decisionmakers, health care system decisionmakers, policymakers, and patients.

• Clinical Decisionmakers. The evidence uncovered through AHRQ-sponsored research and tools developed from those findings help clinicians, consumers, patients, and health care institutions make informed choices about which treatments work, for whom, when, and at what cost.
• Health Care System Decisionmakers. Health plan and health care system managers use the findings and tools developed through AHRQ-sponsored research to make choices on how to improve the health care system's ability to increase access to care and deliver high-quality, high-value care. Purchasers use the products of AHRQ-sponsored research to obtain high-quality health care services.
• Policymakers. Public- and private-sector policymakers use the information produced by AHRQ to expand their ability to monitor and evaluate the impact of system changes on outcomes, quality, access, cost, and use of health care and to devise policies designed to improve the performance of the system.

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How AHRQ's Research Helps People

Across the Nation, policymakers, clinicians, patients, and consumers are making better-informed, cost-effective health care decisions, and they are receiving higher quality care thanks to AHRQ-supported research. The following are just a few examples of the research AHRQ has sponsored and how the results of that research have been put into practice by policymakers, those who make purchasing decisions, clinicians, patients, and consumers.

Policymakers Use AHRQ Research in Many Ways

In FY 2001, AHRQ responded to more than 2,500 requests for information from Federal, State, and local government officials searching for evidence to inform their decisions. As a scientific research agency, AHRQ's role in responding to these requests is a simple one: to ensure that policymakers have the benefit of our existing knowledge and past experience so that they can make informed decisions.

AHRQ uses a number of approaches in responding to these requests, including:

• Rigorous analyses of the scientific and medical literature.
• Short-term research on the impact of past policy interventions at the Federal and State levels.
• Simulations of the potential impacts of new policy options.
• Other forms of technical assistance.

The following examples represent selected instances in which AHRQ's research has been used by policymakers to improve the functioning of the entire U.S. health care system.

The Centers for Medicare & Medicaid Services (CMS). CMS revised its Medicare Coverage Issues Manual to include a national coverage policy permitting coverage for the treatment of actinic keratosis (AK), a common skin lesion. This coverage decision was informed by an AHRQ technology assessment on the natural history and management of actinic keratoses. This assessment suggests that the presence of AKs is associated with the development of squamous cell carcinoma (SCC), and that some SCCs arising from AKs may metastasize. SCC accounts for a large percentage of all non-melanoma skin cancer deaths in the Medicare population. Before the national coverage policy was issued, coverage decisions for AK removal were left up to local Medicare carriers. As a result, many carriers developed AK policies with varying degrees of restriction. The new national policy set by CMS supersedes any policies formerly used by local carriers.

In the last 2 years, AHRQ has prepared nine technology assessments for the Coverage and Analysis Group at CMS. Coverage decisions have been issued on three of these topics. Decisions related to the other six assessments are still pending in CMS. Three additional technology assessments are currently in preparation at AHRQ.

Vitamin D supplements. As a result of an AHRQ-funded study, the State of North Carolina is providing free vitamin D supplementation to breast-fed infants across the State. Researchers at the Center for Education and Research on Therapeutics (CERTs) at the University of North Carolina (UNC) at Chapel Hill, and Wake Forest University School of Medicine, Winston-Salem, found that many exclusively breast-fed, dark-skinned infants would benefit from vitamin D supplementation. All of the rickets cases among pediatric patients were among black children who were breast-fed and who had not had vitamin D supplements.

The findings from this study resulted in an immediate change in North Carolina's public health practice. The North Carolina Pediatric Society requested that the State distribute a multivitamin supplement free-of-charge to any exclusively breast-fed infant or child 6 weeks of age or older. Funding for the supplements was provided through a Maternal and Child Health Block Grant and distributed through the Supplemental Nutrition Program for Women, Infants and Children. Over a 16-month period, more than 1,500 children received vitamin D supplements at a cost of about $1.50 per month, per child. Fact sheets were developed to help educate parents and clinicians about the need for vitamin D supplementation for breast-fed infants and children.

Using AHRQ's Quality Indicators (QIs) to assess quality of care. The Healthcare Association of New York State (HANYS) uses the QIs from AHRQ's Healthcare Cost and Utilization Project (HCUP) to assess the quality of care delivered by over 200 hospitals in New York State. A number of programs have been implemented to improve healthcare quality based on these assessments. For example, a program was developed to expand awareness of the availability and effectiveness of immunization programs after QI reports showed low rates of adult immunization for pneumonia and influenza. Similarly, when QI reports showed that certain areas of the State had high rates of hospitalization for diabetes-related illnesses, a diabetes center of excellence was established to improve quality of care for patients with diabetes.

AHRQ's Research Findings Help Clinicians and Patients

The pace of medical discovery and innovation has never been greater. But experience has repeatedly demonstrated that great opportunities for improving health, developed through biomedical research, are easily lost if physicians and patients are unable to make the best use of the knowledge in everyday care. These wasted opportunities result in the underuse of effective interventions, continued reliance on outmoded approaches to patient care, and inappropriate use of new and often more expensive interventions.

Failure to understand which services work best, under what circumstances, and for which types of patients contributes to the ever-increasing cost of care, low quality and ineffective care, threats to patient safety, and avoidable loss of lives. AHRQ's objective is to close that gap by focusing on the effectiveness and cost-effectiveness of health care services and the organization, management, and financing of the health care systems through which these services are delivered. AHRQ's research ultimately assures that patients and society reap the full rewards of basic research and biomedical innovation.

The following examples illustrate how AHRQ-sponsored research has helped patients with chronic diseases become active participants in their care and spend less time in the hospital.

Chronic disease self-management. A disease management program, developed with AHRQ support, has been widely adopted across the United States, as well as in China, England, New Zealand, Australia, Norway, and Sweden. The 5-year research project funded by AHRQ and the State of California demonstrated the benefits of chronic disease self-management in reducing hospitalization among people with multiple chronic conditions.

The researchers developed and evaluated a community-based self-management program for chronic illness. More than 1,000 people with heart disease, lung disease, stroke, or arthritis participated in the 6-month trial and were followed for up to 3 years. Patients who completed this study showed significant improvement in exercise, cognitive symptom management, communication with their doctors, self-reported general health, health distress, fatigue, disability, and social/role activity limitations. They also spent fewer days in the hospital.

The Department of Veterans Affairs is using the findings from this research, and the course content has been published as a book and made into an audio relaxation tape.

Advance directives to guide end-of-life care. "Let Me Decide" is a comprehensive advance directive that allows individuals and their families to specify a range of health care choices for life-threatening illnesses, cardiac arrest, and nutrition. The tool was developed by researchers at McMaster University through a grant from AHRQ and was based on AHRQ-funded research suggesting that systematic use of such a program could reduce use of health care services without affecting satisfaction or mortality. With more specific information than is sometimes found in generic advance directives, the "Let Me Decide" advance directive contains a personal statement, a definition of terms used in the document, and a health care chart that allows specific decisions regarding levels of care preferences (palliative, limited, surgical, and intensive), as well as the patient's wishes concerning nutrition and cardiac arrest.

In addition to the advanced directive, a complete educational package has been created by New Grange Press that consists of a booklet, three videos, a set of slides, research papers, a cassette audio tape, and "Let Me Decide" advance directive forms with instructions. The booklet is available in eight languages, and the video is available in French and English.

AHRQ's Research Findings Help Providers, Consumers, and Purchasers of Care

AHRQ, in conjunction with both public- and private-sector partners, supports a variety of projects that help people make important choices about the health care they receive. For example:

Using the Web to compare nursing homes. The Center for Medicare & Medicaid Services' very popular Web site, NursingHomeCompare—http://www.medicare.gov/nhcompare/home.asp—grew out of an AHRQ-funded project to develop a consumer information system to help people find data on nursing homes. The site provides detailed information about the performance of every Medicare and Medicaid certified nursing home in the country. Visitors—including patients, families, and clinicians—can compare nursing homes in a specific geographic area by looking at nursing home characteristics (e.g., number of beds, type of ownership), resident characteristics (e.g., percent of residents with pressure sores or urinary incontinence), State inspection results, and nursing staff information (e.g., number of nurses and types of licenses they hold). The site was launched 2 years ago and has an average of 400,000 page views per month.

Tool to help purchasers of health plans. The National Business Coalition for Health (NBCH) has adopted findings from several AHRQ products, including the July 2001 report on Making Health Care Safer: A Critical Analysis of Patient Safety Practices, and incorporated them into their 2002 NBCH request for information (RFI), a standard tool that affiliated employers use to solicit potential health plans with which to contract.

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