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Statement by
Carolyn Clancy, M.D.
Acting Director, Agency for Healthcare Research and Quality, Department of Health and Human Services
on
AHRQ's Role in Eliminating Racial and Ethnic Disparities in Health
before the
Subcommittee on Criminal Justice, Drug Policy, and Human Resources, House Committee on Government Reform

May 21, 2002

Mr. Chairman, I appreciate this opportunity to discuss the relationship of the research of the Agency for Healthcare Research Quality (AHRQ) to the issues raised by the Institute of Medicine (IOM) report, Unequal Treatment: Confronting Racial and Ethnic Disparities in Health Care. AHRQ research provided an important underpinning for the IOM report and the agency worked closely with the IOM committee throughout the development of their report. Most importantly, I want to discuss how AHRQ's agenda, through its research and other activities, is increasingly focused on identification of effective strategies for eliminating these disparities and monitoring our progress toward that goal.

Two Observations

Mr. Chairman, before turning to the IOM report, I would like to offer two observations. First, I would like to put in context how the research of the National Institute of Health and AHRQ complement each other. The biomedical research of NIH focuses on the processes of disease, the functioning of body systems, the uniqueness of our genetic make-up, and the interaction of all of these factors with our environment. NIH identifies what can work to improve patient health through research on the "efficacy" of health care services, determining which services might work under ideal conditions. As a result, NIH plays a critical role in expanding our options for preventing, diagnosing, treating, and even curing disease.

AHRQ complements NIH by focusing on the "effectiveness" of clinical services: developing the scientific evidence regarding which patients benefit most from specific health care services under ordinary, day-to-day conditions. The effectiveness of promising new interventions can be undermined by a host of other factors: other medical conditions or diseases of the patient; interaction with other drugs; the difficulty or unpleasantness of complying with the treatment; or the impact of economic or insurance coverage issues, to name just a few. In addition, providers may not be certain that the findings of a clinical trial apply to their patients and there is often little information that permits a provider to compare the comparative effectiveness and cost-effectiveness of different services. AHRQ research is intended to address these types of issues.

But our mission has another important dimension: AHRQ evaluates the effectiveness and efficiency of how we organize, manage, and finance health care services. Our research has demonstrated that efforts to improve the quality and safety of patient care require that we link scientific evidence on services that work with evidence on how best to organize and manage the settings where patients receive their care. We also focus on the circumstances under which caregivers deliver the highest quality care and the types of support and incentives necessary for them to do that. For example, we have sponsored studies demonstrating that for surgical procedures performed for Medicare beneficiaries, there is a clear relationship between volume and quality.

Second, it is important to recognize that the issue of poor quality care is not merely an issue for special populations, such as racial and ethnic groups, the economically disadvantaged, or the disabled. The reality is that this problem affects all of us. An AHRQ study published in the New England Journal of Medicine regarding clot-busting drugs that found that for Medicare beneficiaries, only 59 percent of white men, 56 percent of white women, 50 percent of black men, and 44 percent of black women, who met the clinical criteria for these drugs, received them. These results indicate that while significant disparities associated with race and ethnicity exist, the group with the best results still has ample room for improvement. In short, disparities associated with race and ethnicity are a critical component of efforts to improve quality of care overall.

We know that some disparities in treatment will take place in the many areas of medical care for which there is no definitive evidence regarding the right treatment. However, in areas like clot-busting drugs, where science can tell us what works, we need to redouble our efforts to ensure that all Americans receive quality health care.

IOM Report on Disparities in Health Care

Mr. Chairman, AHRQ has supported research over the past decade that has documented the extensiveness of racial and ethnic disparities and identified some of the causal factors that need to be addressed. In fact, many of the studies cited in the report are the direct result of AHRQ's research investments. For example, AHRQ research found that:

• AHRQ state-of-the-art assessment of patients' experiences with care demonstrate that minorities consistently rate all aspects of their health care more negatively than whites.
• Recently reported data from the Medical Expenditure Panel Survey (MEPS) found that slightly more than half of Americans age 18 and older (53.8 percent) always received urgent medical care as soon as they wanted it in calendar year 2000. While there was very little difference between blacks and whites aged 18 to 64 in their reports of timeliness of receiving urgent care (51.5 percent and 52.9 percent respectively), significantly fewer Hispanics (41.2 percent) reported always receiving urgent care when they wanted it.
• Data from AHRQ's Healthcare Cost and Utilization Project (HCUP) demonstrated that Hispanics were significantly less likely to undergo numerous major therapeutic procedures than whites.

As a practicing physician, I am sorry to report that an important AHRQ study demonstrated that physicians can contribute to differences in access to care for blacks and women. The researchers used well-trained patient actors�two black men, two black women, two white men, and two white women�who described their chest pain using the same scripts, reporting identical clinical symptoms, and reporting the same insurance and professions. Yet even with patients in such identical circumstances, blacks and women had relative odds for being referred to cardiac catherization, the gold standard for diagnosing coronary artery disease, that were 60% of the odds for whites and men. Black women fared the worst, with relative odds that were 40%.

Although AHRQ-supported research has told us a great deal about the existence and extent of disparities in health care, there is much we don't know. We don't know:

• All of the reasons why and how disparities occur;
• What proportion of observed disparities in health are amenable to improvements in health care;
• What local circumstances ameliorate or increase disparities (community characteristics),
• How and when to collect relevant data respectfully; and
• How to link evidence of a problem to possible solutions.

AHRQ Efforts to Reduce and Eliminate Health Care Disparities

Mr. Chairman, AHRQ has recognized for several years that the time for descriptive studies of disparities is long gone. The scope of the problem is quite clear. The research that is needed today must provide evidence on effective strategies to reduce, and ultimately eliminate, disparities in care that are unrelated to the clinical condition of the patient or patient preference.

This shift in our research direction began several years ago and was reinforced by our reauthorization in 1999 and the AHRQ-related provisions of The Minority Health and Health Disparities Act of 2000. In fact, the IOM report cites AHRQ's research and other initiatives as important efforts to develop a more systematic focus on solutions to address the causes of disparities and to provide information needed to measure and track improvement. These efforts will be the focus of the remainder of my testimony.

Developing and Evaluating Potential Solutions

Even as the Minority Health and Health Disparity legislation was moving toward passage, AHRQ was already soliciting applications for a major research effort to move in this direction. Known as EXCEED, (Excellence Centers to Eliminate Ethnic and racial Disparities in Healthcare), this project awarded 5-year grants in FY 2000 as part of a collaborative effort with the National Institutes of Health, the Health Resources and Services Administration, and a number of national and local foundations. The Centers analyze reasons for disparities and identify and evaluate the effectiveness of strategies for reducing and eliminating them.

Each of the nine Centers focuses on four to seven studies organized around a central theme. For example:

• Diabetes care, cancer screening, and other preventive services for elderly American Indians/Alaska Natives.
• Health disparities in cancer, hypertension, and HIV disease among African American adults, particularly those living in rural areas.
• Why effective care for managing premature birth, breast cancer, stroke, and hypertension is underused in ethnically diverse Harlem communities.
• Access and quality of care for chronically ill African-American adults and low-income children who primarily receive care from community providers in inner-city and rural areas.

Including EXCEED, AHRQ has supported nearly 200 grants and contracts in recent years with relevance to our health disparities agenda since 1999. A few examples include:

• Development of a culturally sensitive, interactive computer program to enhance diabetes education with inner-city African Americans and Latinos.
• Creation of a two-part training program for primary care providers uses a customized screening and charting instrument for use in adolescent preventive services.
• A nurse-mediated model is being designed to improve the delivery of clinical preventive services in primary care clinics serving low-income, largely Medicaid-eligible populations.

AHRQ is also using its network of 19 Primary Care Practice-Based Research Networks to develop strategies for improving the primary care services delivered to ethnically and socio-economically diverse populations. For example:

• The Southeast Regional Clinicians' Network, based at Morehouse School of Medicine in Atlanta, links 142 federally funded community health centers in 8 States.
• The Mount Sinai Primary Care Practice-Based Research Network links academic centers with community health centers in Harlem.

I should also note that AHRQ's 1999 reauthorization legislation authorized the establishment of the agency's Office for Priority Populations Research (OPPR). The goal of OPPR is to improve the coordination, support, management, and conduct of health services research on the priority populations enumerated in our statute. They include groups that face disparities in access and use, including minority and low-income groups, elderly, children, women, those with special health care needs, including end-of-life care, and those living in rural or inner-city areas.

Community-based Research

Mr. Chairman, we have also begun to change the way we design, conduct, and disseminate our research. For racial, ethnic, and cultural minorities, there has long been concern that research is "something done to us." EXCEED was the beginning of our effort to change both the perception and the reality of that objection. EXCEED encouraged the formation of new research relationships as well as building on existing partnerships between researchers, professional organizations, and community-based organizations instrumental in helping to influence change in local communities. The Centers are involved in participatory research efforts in which community members are involved in all stages and aspects of the studies. Several EXCEED projects are being conducted in collaboration with community health centers and other health care organizations serving ethnically diverse populations. AHRQ expects that these participatory research partnerships will help lead to more effective implementation of research findings that address the social, cultural, and economic conditions of the community.

The Health Disparities legislation went a step further by authorizing AHRQ to draw upon community-based participatory research strategies to reduce disparities. In collaboration with the Kellogg Foundation, the Office of Minority Health, and the National Institutes of Health, AHRQ hosted a two-day expert meeting last November to draw upon the expertise of those with experience in conducting community-based research, learn from community-based groups, and develop an action plan.

Building Minority Research Infrastructure

The third element in reducing disparities is to ensure that research accurately reflects the diverse perspectives of an increasingly diverse population in the United States. To accomplish this goal, AHRQ has sought to facilitate the development of greater capacity for health services research focused on reducing racial and ethnic inequities in health care. Once again, this aim was incorporated into EXCEED and several projects link new researchers with more experienced investigators through both formal and informal mentoring and career development opportunities.

Developing Tools to Measure and Monitor our Progress

Quality Measurement

As the lead agency of the Department for quality, AHRQ has played a key role in the development and validation of measures to assess the quality of health care provided to patients. The Health Disparity legislation directed the agency to draw upon its expertise in this area to develop a report describing the state-of-the-art of quality measurement for minority and other health disparity populations that will identify critical unmet needs, the current activities of the Department to address those needs, and a description of related activities in the private sector. AHRQ is working with our colleagues in the Department to prepare this report, which will be submitted to the Congress next year.

National Report on Healthcare Disparities

AHRQ's reauthorization legislation directed the Agency to produce two landmark annual reports beginning in FY 2003. The National Quality Report (NQR) will provide a detailed picture of the state of health care quality in America. The second report, The National Healthcare Disparities Report (NHDR), will detail "prevailing disparities in health care delivery as it relates to racial factors and socioeconomic factors in priority populations." The legislation identified as priority populations rural, inner-city, low income groups, minority groups, women, children, the elderly and individuals with special health care needs.

The two reports are closely linked. For example, the "Equity" section of quality report will be expanded in the disparities report. Also, the NHDR will use the framework created for the NQR, which is being produced first. This framework will include:

• Quality measures by race, ethnicity, and socioeconomic status
• Consumer/patient assessments of healthcare quality; and
• Quality measures for priority conditions.

AHRQ is using a similar process to produce the quality and disparities reports. To that end, AHRQ has obtained expert advice regarding content and framework of the reports, including considerable input from the Institute of Medicine, broad input from the public, discussions with public and private stakeholders, and technical expertise and data from across the Department of Health and Human Services.

Conclusion

Mr. Chairman, AHRQ is very proud of its tradition in supporting groundbreaking research to identify racial and ethnic inequities in the delivery and outcomes of health care services in this Nation. The Agency is moving forward with important initiatives that will help us understand why these gaps exist, provide the evidence-based information we need to eliminate them, and an annual report which will provide the nation a clear roadmap of our progress. The findings of "Unequal Treatment" are sobering but we believe there is an important opportunity to establish elimination of disparities in health care as a core component of efforts to improve quality of care for everyone. AHRQ's current initiatives are designed to reinforce and strengthen that opportunity.

Thank you very much for giving me the opportunity to highlight AHRQ's efforts in this area, and I will be pleased to answer any questions you may have.