Summary

We all want to believe that when people get cancer—including ourselves and our relatives—they will get health care of the highest quality. Concerns about a growing lack of public confidence in the nation's system of care prompted the National Cancer Policy Board to undertake a comprehensive review of the evidence on the effectiveness of cancer services and delivery systems, the adequacy of quality assurance mechanisms, and barriers that impede access to cancer care. The National Cancer Policy Board (NCPB) was established in March 1997 at the Institute of Medicine (IOM) and National Research Council to address issues that arise in the prevention, control, diagnosis, treatment, and palliation of cancer. The 20-member board includes consumers, health care providers, and investigators in several disciplines. The NCPB report, Ensuring Quality Cancer Care, addresses five questions:

  1. What is the state of the cancer care "system"?
  2. What is quality cancer care and how is it measured?
  3. What cancer care quality problems are evident and what steps can be taken to improve care?
  4. How can we improve what we know about the quality of cancer care?
  5. What steps can be taken to overcome barriers to access to quality cancer care?

What is The State of the Cancer Care "System"?

The National Cancer Policy Board began its deliberations on quality by trying to describe what an ideal cancer care system would look and feel like from the vantage point of an individual receiving cancer care. The NCPB suggested that, for many, excellence in cancer care would be achieved if individuals had:

  • access to comprehensive and coordinated services;
  • confidence in the experience and training of their providers;


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--> Summary We all want to believe that when people get cancer—including ourselves and our relatives—they will get health care of the highest quality. Concerns about a growing lack of public confidence in the nation's system of care prompted the National Cancer Policy Board to undertake a comprehensive review of the evidence on the effectiveness of cancer services and delivery systems, the adequacy of quality assurance mechanisms, and barriers that impede access to cancer care. The National Cancer Policy Board (NCPB) was established in March 1997 at the Institute of Medicine (IOM) and National Research Council to address issues that arise in the prevention, control, diagnosis, treatment, and palliation of cancer. The 20-member board includes consumers, health care providers, and investigators in several disciplines. The NCPB report, Ensuring Quality Cancer Care, addresses five questions: What is the state of the cancer care "system"? What is quality cancer care and how is it measured? What cancer care quality problems are evident and what steps can be taken to improve care? How can we improve what we know about the quality of cancer care? What steps can be taken to overcome barriers to access to quality cancer care? What is The State of the Cancer Care "System"? The National Cancer Policy Board began its deliberations on quality by trying to describe what an ideal cancer care system would look and feel like from the vantage point of an individual receiving cancer care. The NCPB suggested that, for many, excellence in cancer care would be achieved if individuals had: access to comprehensive and coordinated services; confidence in the experience and training of their providers;

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--> a feeling that providers respected them, listened to them, and advocated on their behalf; an ability to ask questions and voice opinions comfortably, to be full participants in all decisions regarding care; a clear understanding of their diagnosis and access to information to aid this understanding; awareness of all treatment options and of the risks and benefits associated with each; confidence that recommended treatments are appropriate, offering the best chance of a good outcome consistent with personal preferences; a prospective plan for treatment and palliation; a health care professional responsible (and accountable) for organizing this plan in partnership with each individual; and assurances that agreed-upon national standards of quality care are met at their site of care. The NCPB then described at least some aspects of a cancer care system that would support such an ideal state of care. A system of ideal cancer care would articulate goals consistent with this vision of quality cancer care; implement policies to achieve these goals; identify barriers to the practice and receipt of quality care and target interventions to overcome these barriers; further efforts to coordinate the currently diverse systems of care; ensure appropriate training for cancer care providers; have mechanisms in place to facilitate the translation of research to clinical practice; monitor and ensure the quality of care; and conduct research necessary to further the understanding of effective cancer care. The NCPB has concluded that for many Americans with cancer, there is a wide gulf between what could be construed as the ideal and the reality of their experience with cancer care. There is no national cancer care program or system of care in the United States. Like other chronic illnesses, efforts to diagnose and treat cancer are centered on individual physicians, health plans, and cancer care centers. The ad hoc and fragmented cancer care system does not ensure access to care, lacks coordination, and is inefficient in its use of resources. The authority to organize, coordinate, and improve cancer care services rests largely with service providers and insurers. At numerous sites in the federal government, programs and research directly relate to the quality of cancer care, but in no one place are these disparate efforts coordinated or even described. Efforts to improve cancer care in many cases will therefore be local or regional and could feasibly originate in a physician's practice, a hospital, or a managed care plan. Because cancer disproportionately affects the elderly, the Medicare program could be an important vehicle for change. Certainly, issues related to quality cancer care have to be addressed at the national and state levels, in coordination with other quality-of-care efforts.

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--> What is Quality Cancer Care and How is it Measured? Health care can be judged as good to the extent that it increases the likelihood of desired health outcomes and is consistent with current professional knowledge (IOM, 1990). In practical terms, poor quality can mean overuse (e.g., unnecessary tests, medication, and procedures, with associated risks and side effects); underuse (e.g., not receiving a lifesaving surgical procedure); or misuse (e.g., medicines that should not be given together, poor surgical technique). Quality care means providing patients with appropriate services in a technically competent manner, with good communication, shared decision making, and cultural sensitivity. The first step in assessing quality of care is establishing which attributes of care are linked to optimal outcomes (e.g., survival, enhanced quality of life). Large, carefully designed clinical trials are usually necessary to establish which specific processes of care or treatments are effective. Early detection of breast cancer through screening mammography, for example, has been shown to reduce mortality significantly for women age 50 and older. Other types of research, notably health services research, also have a role to play in defining high-quality care. Next, observations of current medical practice—for example, through reviews of a sample of medical records—reveal the extent to which effective care is being applied. Measures of quality may assess structural aspects of the health care delivery system (e.g., hospital case volume), processes of care (e.g., use of screening), or outcomes of care (e.g., survival, quality of life). Each of these dimensions of quality could be assessed to provide complementary information. What Problems are Evident in the Quality of Cancer Care and What Steps Can be Taken to Improve Care? More is known about the quality of care for breast cancer than for any other kind of cancer. Treatment of early breast cancer saves lives, and early detection through screening contributes to early diagnosis, when treatment is most effective. When established quality measures have been used to assess the care women receive, the following quality problems have been identified: underuse of mammography to detect cancer early; lack of adherence to standards for diagnosis (e.g., inadequate biopsies, poor reporting of pathology studies); inadequate patient counseling regarding treatment options; and underuse of radiation therapy and adjuvant chemotherapy after surgery. The consequences of these lapses in care are, in some cases, reduced survival and, in others, compromised quality of life.

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--> Based on the best available evidence, some individuals with cancer do not receive care known to be effective for their condition. The magnitude of the problem is not known, but the National Cancer Policy Board believes it is substantial. The reasons for failure to deliver high-quality care have not been studied adequately, nor has there been much investigation of how appropriate standards vary from patient to patient. The means for improving the quality of cancer care, which involve changes in the health care system, are the first five of a total of ten recommendations of the National Cancer Policy Board. Implementation of these recommendations may vary by locality and by system of care with, for example, different mechanisms needed in rural versus urban areas, or for particularly high-risk or underserved populations. Cancer care is optimally delivered in systems of care that: RECOMMENDATION 1: Ensure that patients undergoing procedures that are technically difficult to perform and have been associated with higher mortality in lower-volume settings receive care at facilities with extensive experience (i.e., high-volume facilities). Examples of such procedures include removal of all or part of the esophagus, surgery for pancreatic cancer, removal of pelvic organs, and complex chemotherapy regimens. Many aspects of the delivery of health care can potentially affect its quality. There is convincing evidence of a relationship between treatment in higher-volume hospitals and better short-term survival for individuals with several types of cancer for which high-risk surgery is indicated (e.g., pancreatic cancer, non-small-cell lung cancer). Several studies show very large effects, with lower-volume hospitals having postsurgical mortality rates two to three times higher than hospitals that do more such procedures. A dose-response effect is also evident to support the finding that as volume increases, so do good outcomes. The findings cut across cancer types and systems of care, sharing the common element of complicated medical or surgical intervention. Although estimates are imprecise, a relatively large share of high-risk surgery is taking place in lower-volume settings (e.g., from one-quarter to one-half of surgical procedures for pancreatic cancer). More limited data show a relationship between surgery performed at higher-volume hospitals and better outcomes for men with prostate cancer who undergo radical prostatectomy and for women who undergo breast cancer surgery. A few studies of the management of other types of cancer (i.e., testicular cancer, leukemia) also show a relationship between higher volume and better outcome. This volume-outcome relationship appears to be strong, and consistent with findings from other areas of complex care (e.g., coronary revascularization procedures). Even in the absence of extensive data for each particular cancer type and stage, evidence strongly indicates that health outcomes are better in high-volume settings for highly technical cancer management. RECOMMENDATION 2: Use systematically developed guidelines based on the best available evidence for prevention, diagnosis, treatment, and palliative care.

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--> Total quality improvement initiatives, disease management programs, and implementation of clinical practice guidelines all have the potential to improve care within health systems. Information about clinical practice can serve as a powerful tool to change physician and patient behavior and to improve the use of effective treatments. The experience with oncology practice guidelines has been mixed, however, with some examples of success, but other examples of failure to change provider behavior or outcomes. Many guideline efforts have failed because of flaws in the way the guidelines were developed or implemented. Evidence suggests that care can be improved when providers themselves are involved in shaping guidelines and when systems of accountability are in place. Such efforts must be intensified. RECOMMENDATION 3: measure and monitor the quality of care using a core set of quality measures. Once effective care has been identified through the research system, mechanisms to develop and implement measurement systems are needed. Translating research results into quality monitoring measures is a complex process that will require significant research investments. There is now a broad consensus about how to assess some aspects of quality of care for many common cancers (e.g., cancers of the breast, colon, lung, prostate, and cervix), but specific measures of the quality of care for these cancers are still being developed and tested within health delivery systems. Systematic improvements in health care quality will likely only occur through collaborative efforts of the public and private sectors. As large health care purchasers, both sectors have a stake in improving the quality of care, and both sectors have knowledge and experience concerning quality measurement and reporting. A public-private collaborative approach has recently been recommended by the President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry, and some initial implementation steps are being taken (President's Advisory Commission, 1998). Cancer care quality measures should span the continuum of cancer care and be developed through a coordinated public-private effort . To ensure the rapid translation of research into practice, a mechanism is needed to quickly identify the results of research with quality-of-care implications and ensure that it is applied in monitoring quality. In a few areas, evidence suggests that care does not meet national standards for interventions known to improve care. After primary prevention, cancer screening is the most effective method to reduce the burden of cancer, yet screening is underused. It is often health care providers who can be held accountable for the underuse of cancer screening tests. One of the strongest predictors of whether a person will be screened for cancer is whether the physician recommends it, and evidence suggests that physicians order fewer cancer screening tests than they should. Even when screening is accomplished, many individuals fail to receive timely, or any, follow-up of an abnormal screening test. Both screening and follow-up rates can be improved with interventions aimed both at those eligible for screening and at health care providers (e.g., reminder systems). Implementation of accountability systems can greatly increase participation in cancer screening.

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--> Cancer care quality measures should be used to hold providers, including health care systems, health plans, and physicians, accountable for demonstrating that they provide and improve quality of care. There are many opportunities to exert leverage on the health care system to improve quality. Quality assurance systems are often not apparent to consumers, but have the potential to greatly affect their care: large employer groups are holding managed care plans accountable for quality performance goals; the Health Care Financing Administration (HCFA, which funds Medicare and the federal component of Medicaid) requires Medicare and Medicaid health plans to produce standard quality reports; and state Medicaid programs are beginning to include quality provisions in their contracts with plans and providers. Six of ten new cancer cases occur among people age 65 and older and, consequently, Medicare is the principal payer for cancer care. There is generally a lack of quality-related data from fee-for-service providers from whom most Medicare beneficiaries receive their care. Information systems are, however, in place that allow the reporting on a regional basis of some quality indicators (e.g., cancer screening rates) relevant to those in fee-for-service systems. For Medicare beneficiaries in managed care plans, accountability systems should incorporate core measures of quality cancer care. Cancer care quality measures should be applied to care provided through the Medicare and Medicaid programs as a requirement for participation in these programs. The collection, reporting, and analysis of information about the quality of cancer care will be expensive. Many segments of the health care industry will invest in information systems to maximize efficiency and to stay competitive, however, some may require incentives to provide patient-level data. Information about quality cancer care is becoming more available to individuals with cancer (or at risk for cancer), but it is not yet easily accessible or understandable to consumers. A number of potential quality indicators can be listed, but most have not been evaluated to assess their ultimate value for consumers. It is unclear, for example, how the following indicators affect an individual's experience of care or health care outcomes: a physician's board certification, a hospital's approval status, for example, as determined by the American College of Surgeons' Commission on Cancer, and a health plan's accreditation status and quality scores from the National Committee for Quality Assurance. By the time a diagnosis of cancer is made and individuals have a clear reason to seek quality care, it is often too late to switch health plans. Also, even if they wanted to, most people

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--> do not have access to alternative plans. Individuals may use available quality indicators to choose doctors and hospitals within their plans, and perhaps to choose alternative courses of treatment, but evidence suggests that individual consumers can exert only a modest ''market'' pressure for quality improvement through access to better information about the quality of cancer care. Large purchasers, such as employers are likely to exert more leverage and to have designated staff to assess alternative plans. Cancer care quality measures should be disseminated widely and communicated to purchasers, providers, consumer organizations, individuals with cancer, policy makers, and health services researchers, in a form that is relevant and useful for health care decision-making. Quality measures enable consumers and purchasers to judge the quality of a system of care by its performance relative to evidence-based standards. RECOMMENDATION 4: Ensure The Following Elements Of Quality Care For Each Individual With Cancer: that recommendations about initial cancer management, which are critical in determining long-term outcome, are made by experienced professionals; an agreed-upon care plan that outlines goals of care; access to the full complement of resources necessary to implement the care plan; access to high-quality clinical trials; policies to ensure full disclosure of information about appropriate treatment options; a mechanism to coordinate services; and psychosocial support services and compassionate care. Some elements of care simply make sense—that is, they have strong face validity and can reasonably be assumed to improve care unless and until evidence accumulates to the contrary. This recommendation amounts to a statement of the ideal, based on principles of cancer care articulated by cancer survivors. Details of how to interpret and apply the principles will vary according to health plan, cancer type, stage of disease, and preferences of the individual needing care. RECOMMENDATION 5: Ensure quality of care at the end of life, in particular, the management of cancer-related pain and timely referral to palliative and hospice care. Cancer is the second leading cause of death in the United States. A strong body of evidence suggests that the experience of dying for many with cancer can be greatly improved with better palliative care (IOM, 1997). Many individuals with cancer suffer pain needlessly and have their treatment preferences ignored. Practice guidelines are available to assist health care providers in this area, but they have not been adopted widely. Financial barriers limit effective care for

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--> people at the end of life. Additional studies are needed to identify non financial barriers to appropriate end-of-life care. How Can We Improve What We Know About the Quality of Cancer Care? For many aspects of cancer care, it is not yet possible to assess quality because the first step in quality assessment has not been taken—the conduct of clinical trials. Consequently, for many types of cancer, answers to the following basic questions are not yet available: How frequently should patients be evaluated following their primary cancer therapy, what tests should be included in the follow-up regimen, and who should provide follow-up care? What is the most effective way to manage recurrent cancers, or cancers first identified at late stages? RECOMMENDATION 6: Federal and private research sponsors such as the National Cancer Institute, the Agency for Health Care Policy and Research, and various health plans should invest in clinical trials to address questions about cancer care management. For some questions regarding cancer management, a health services research component could possibly be integrated into a clinical trial designed to assess the efficacy of a new treatment. For other questions, innovative units of randomization could be used, for example, randomizing providers (instead of patients) to test different clinical management strategies. Such trials have been used to assess educational and service delivery topics (e.g., colorectal screening performed by nurse clinicians, counseling patients to quit smoking). RECOMMENDATION 7: A cancer data system is needed that can provide quality benchmarks for use by systems of care (such as hospitals, provider groups, and managed care systems). Toward that end, in 1999, the National Cancer Policy Board will hold workshops to: identify how best to meet the data needs for cancer in light of quality monitoring goals; identify financial and other resources needed to improve the cancer data system to achieve quality-related goals; and develop strategies to improve data available on the quality of cancer care. The second step of quality assessment involves surveillance—making sure that evidence regarding what works is applied in practice. Ideally, quality assessment studies would include recently diagnosed individuals with cancer in care settings representative of contemporary practice across the country, using information sources with sufficient detail to allow appropriate comparisons. The available evidence on the quality of cancer care is far from this ideal.

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--> Two national databases are available with which to assess the quality of cancer care, but each has limitations. The Surveillance, Epidemiology, and End Results (SEER) cancer registry, maintained by the National Cancer Institute (NCI), when linked to Medicare and other insurance administrative files, has been valuable in assessing the quality of care for the elderly and other insured populations. It is also useful in identifying a sample of cases for in-depth studies of quality-related issues. The SEER registry, however, covers only 14 percent of the U.S. population in certain geographic locations, so it may not adequately represent the diversity of systems of care. Finding ways to capture measures of process of care, treatment information, and intermediate outcomes—and to improving the timeliness of reporting—would enhance the registry's use in quality assessment. The National Cancer Data Base (NCDB), a joint project of the American College of Surgeons' Commission on Cancer and the American Cancer Society, now holds information on more than half of all newly diagnosed cases of cancer nationwide and includes many of the demographic, clinical, and health system data elements necessary to assess quality of care. A limitation of the NCDB is the absence of complete information on outpatient care. The NCDB has not yet been widely used to assess quality of care, but it has great potential for doing so. Existing data systems must be enhanced so that questions about quality of care can be answered comprehensively, on a national scale, without delays of many years between data collection and analysis. An effective system would capture information about: individuals with cancer (e.g., age, race and ethnicity, socioeconomic status, insurance or health plan coverage); their condition (e.g., stage, grade, histological pattern, comorbid conditions); their treatment, including significant outpatient treatments (e.g., adjuvant therapy, radiation therapy); their providers (e.g., specialty training); site of care delivery (e.g., community hospital, cancer center); type of care delivery system (e.g., managed care, fee for service); and outcomes (e.g., satisfaction, relapse, complications, quality of life, survival time, death). It may be costly and difficult to obtain all of the desired data elements for all individuals with available sources, so sampling techniques could be used to make the task manageable for targeted studies. Alternatively, it may be feasible to link some databases (e.g., those describing structural aspects of care such as hospital characteristics) to other existing databases. It is unlikely that one single database can meet all of the various objectives of such systems, for example, cancer surveillance, research, and quality monitoring. Data systems need to be monitored to assure accuracy, and should be automated to improve the timeliness of quality data. Data gathered into national databases, in particular, should be made available quickly for analysis by investigators and evaluators. RECOMMENDATION 8: Public and private sponsors of cancer care research should support national studies of recently diagnosed individuals with

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--> cancer, using information sources with sufficient detail to assess patterns of cancer care and factors associated with the receipt of good care. Research sponsors should also support training for cancer care providers interested in health services research. Grants to support the analysis of data that focus on pressing health policy questions, especially about how the organization and financing of cancer care affect the processes and outcomes of care, should be a high priority. Methodologic research is also needed to improve the quality of cancer-related health services research, for example, to develop tools for "case-mix" adjustments to reduce the potential for bias inherent in observational cancer research. An annual report that provides a description of the status of cancer-related quality-of-care research, and summarizes relevant published literature in the area would serve as a valuable resource for health services researchers and those involved in quality assessment. Such a report would also help organizations set priorities for research, ensure that their research portfolios address important quality-of-care questions, and ensure that their research programs are complementary and coordinated. What Steps Can Be Taken to Overcome Barriers of Access to Quality Cancer Care? RECOMMENDATION 9: Services for the un-and underinsured should be enhanced to ensure entry to, and equitable treatment within, the cancer care system. Cancer is among the most expensive conditions to treat, and individuals with cancer and their families invariably bear some of the financial burden. Most individuals diagnosed with cancer are elderly and have Medicare coverage, but an estimated 7 percent of individuals facing a new diagnosis of cancer lack any health insurance at all. For these individuals, cancer can be catastrophic to their finances as well as their health. The problem that affects far more indiviauals, however, is underinsurance—health plans and insurance coverage offer some, but often incomplete, protection against the high costs of cancer care. High deductibles, copayments or coinsurance, and coverage caps can all contribute to high out-of-pocket expenditures. Medicare, for example, was estimated to cover only 83 percent of typical total charges for lung cancer and 65 percent of charges for breast cancer in 1986. Some individuals have additional protection through other insurers (e.g., Medigap policies or Medicaid), but despite this, the financial burden of cancer can be substantial even among those covered by a health plan. Limits on prescription drug coverage, an expensive and widely used benefit (e.g., outpatient pain medications), are a particular problem for many with cancer because the drugs are often expensive. A limited number of free services or financial assistance programs are available to people with cancer, but they do not substitute for adequate insurance coverage for cancer treatment. RECOMMENDATION 10: Studies are needed to find out why specific segments of the population (e.g., members of certain racial or ethnic groups, older patients) do not receive appropriate cancer care. These studies should

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--> measure provider and individual knowledge, attitudes, and beliefs, as well as other potential barriers to access to care. While access problems persist throughout cancer care, overcoming barriers to screening and early detection is a priority because after primary prevention, the greatest improvements in outcomes will be realized by identifying cancers early, when treatments are most effective. Moreover, initial planning is extremely important for many types of cancer, because failure on the first treatment severely limits subsequent treatment options due to the nature of cancer progression. Evidence suggests that much of the disparity in mortality by race could be reduced by improving access to primary care and cancer screening. A number of public and private programs have enhanced access to care. The Centers for Disease Control and Prevention's National Breast and Cervical Cancer Early Detection Program provides screening for women unable to afford care. A few states have launched special programs to pay for cancer care for the poor and uninsured (e.g., the Maryland program for women with breast cancer). Many pharmaceutical companies have patient assistance programs to help defray the costs of expensive chemotherapy drugs. These programs and services cannot substitute for adequate insurance coverage for cancer treatment, but they can ease the financial burden for those eligible to receive them. Although having health insurance coverage improves access, it does not guarantee good care. Several factors other than insurance status and cost can prevent people from "getting to the door" of a health care provider. These include fear of a diagnosis of cancer, distrust of health care providers, language, geography, and difficulties in getting through appointment systems. Incomplete understanding of cancer risk or certain beliefs, such as the belief that one is not at risk or that nothing can be done to change one's fate, may also prevent people from seeking care. Once "in the door," other barriers to access may surface when attempting to navigate the system: for example, getting from a primary care provider to a specialist. Within the system, providers may have difficulty communicating with patients or have insufficient staff to coordinate care and provide all the services patients need. The cancer care system is complex, and different barriers may impede access to care at different phases. Individuals who have low educational attainment or are members of certain racial or ethnic minority groups face higher barriers to receiving cancer care and tend to have less favorable outcomes than other groups.* Limited access to primary care and cancer screening contributes to having cancer diagnosed at latter stages when prognosis is worse. Differences in treatment by race have been well documented; however, it appears that the effect may actually be more closely related to social class than to race. Those of advanced age also appear to be vulnerable in the cancer care system. Older people are less likely than younger people to receive effective cancer treatments, despite evidence that the elderly can tolerate and benefit from them. Some undertreatment is explained by provider attitudes toward treating the elderly, who are perceived as less willing or able to tolerate aggressive treatment. Some undertreatment may also be due to patient preferences and unwillingness to experience the side effects of certain treatments. *   Research in this area sponsored by the National Institutes of Health is addressed in the 1999 IOM report, The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic' Minorities and the Medically Underserved (IOM, 1999).

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--> References IOM (Institute of Medicine). 1990. Medicare: A Strategy for Quality Assurance, KN Lohr, ed. Washington, D.C.: National Academy Press. IOM. 1997. Approaching Death: Improving Care at the End of Life. MJ Field, CK Cassel, eds. Washington, D.C.: National Academy Press. IOM. 1999. The Unequal Burden of Cancer: An Assessment of NIH Research and Programs for Ethnic Minorities and the Medically Underserved. MA Haynes, BD Smedley, eds. Washington, D.C: National Academy Press. President's Advisory Commission on Consumer Protection and Quality in the Health Care Industry. 1998. Quality First: Better Health Care for All Americans. Washington, D.C.