There is a clear need to increase the level of attention paid to vulnerable groups, including both those who, because of their chronic illness or disability, have many interactions with the health system, and those who have difficulty accessing the system and may be most likely to fall through the cracks during this period of rapid health system change. In the Consumer Bill of Rights and Responsibilities, the Commission articulated that consumers have the right to considerate, respectful care, free of discrimination. In this chapter, the Commission extends this work by specifically addressing ways in which the particular needs of vulnerable populations should be accounted for in the design of systems for health care delivery, quality measurement, and payment.
Development and evaluation of health care quality measures and measurement methods for vulnerable populations should be supported. A focus on vulnerable populations in the design of quality measurement initiatives is valuable, in part, because their experiences may provide new insight on systemwide problems. Attention to vulnerable populations should be integrated within general quality measurement strategies, recognizing that quality measures and measurement methods tailored to vulnerable groups will, in some cases, be required.
Payments to health plans and providers should promote quality health care and improved health and functional status for all patients, including vulnerable populations. Adjusting payments for differences in health or functional status is especially important for Medicare, Medicaid, and other payers that have significant enrollment of individuals with chronic illness or disability so that health plans and providers have an incentive for developing innovative models of care that best serve these individuals. Risk-adjusted payments are also critical to sustaining the safety-net mission of certain providers that provide a disproportionate amount of care to vulnerable populations, such as community health centers, rural health clinics, and academic health centers. The Federal Government should convene high-level stakeholders to determine how best to implement risk-adjusted payments for Medicare. Payment systems also can be better aligned with quality care for vulnerable populations by being broadly based across groups of providers and related health care services to encourage multidisciplinary, coordinated care; providing coverage for health care delivery approaches that have been demonstrated to improve outcomes, functional status, and satisfaction; and rewarding quality performance through financial incentives.
Poverty and lack of insurance can result not only in decreased access to health care, but also increased risk of poor health. Any of these factors can magnify exposure to environmental risks (such as secondary tobacco smoke, poor sanitation, or lead exposure), safety risks (such as traffic hazards and family violence), social and psychological stressors (such as fear of crime), and lack of infrastructure supports (such as counseling or educational services) that contribute to an increased burden of poor health.
Developmental status and age can also be associated with vulnerability. Children have health and developmental needs that are markedly different from adults and require age-appropriate care. Developmental changes, dependency on others, and different patterns of illness and injury require that attention be paid to the unique needs of children in the health system (IOM, 1996). The elderly also have unique health care needs due not only to the increased incidence of illness and disability, but also to the multiple and complex interactions of other types of physical and social consequences of aging.
Significant differences in treatment have been documented by race, ethnicity, and sex that are not explained by other demographic differences, insurance status, clinical factors, or provider characteristics. For instance, African Americans with colorectal cancer have been found to be treated less aggressively than their white counterparts (Ball and Elixhauser, 1996). A number of studies have consistently demonstrated that African Americans are about half as likely as whites to receive interventional therapy for coronary artery disease (Ford and Cooper, 1995). Differences between Latinos and non-Hispanic whites in the use of invasive cardiac procedures also have been documented (Carlisle et al., 1995). Another study showed that women with AIDS receive fewer services than men with AIDS, even after being diagnosed and having accessed the health system (Hellinger, 1993). These studies are just a sample of the large and growing health services research literature documenting the vulnerability of these groups.
Differences across racial and ethnic groups exist not only in treatment patterns, but also in indicators of health status. The persistence of significant racial and ethnic disparities in rates of infant mortality, cardiovascular disease, diabetes, stroke, HIV/AIDS infection, and other areas prompted a recent Presidential initiative to eliminate those gaps by the year 2010 (White House Office of the Press Secretary, 1998).
The underlying reasons for these demonstrated differences are not well understood. Whether these findings can be attributed to discrimination, cultural factors, or other causes is an important area for further study because of the implications for eliminating unwarranted variation in the provision of health services and for improving the health status of all Americans.
To date, there is limited research addressing the effectiveness of these and other innovative models of care for individuals with chronic illness or disability. Some elements of health care delivery that are particularly relevant to patients with chronic conditions include the use of multidisciplinary teams, continuity of care, patient and family empowerment, case management, and outreach or home-based care. A review of more than 50 published studies assessing whether innovative health care programs emphasizing these elements improved outcomes for individuals with chronic illness or disability1 found that improved clinical and functional outcomes were not consistently demonstrated. The review did find evidence that in general these approaches improved patient satisfaction with their care, but other improved outcomes were limited to specific models of health care within particular populations of patients. Specific areas where evidence demonstrated that innovative health programs improved outcomes are summarized below:
The lack of consistent evidence for improved clinical outcomes highlights the need for significant investment in research and innovation of health care delivery models addressing the needs of individuals with chronic conditions and other vulnerable populations. Evidence of enhanced patient satisfaction from models of health care delivery that emphasize continuity of care, multidisciplinary approaches, patient empowerment, and outreach to community settings should guide the development of innovative approaches to care that also aim to improve functional status and clinical outcomes. As evidence is developed to demonstrate effective models of care, health care providers should commit to practicing evidence-based care. Appropriate approaches to caring for individuals with chronic conditions, however, should recognize the unique needs of individual patients. For example, while innovative approaches to caring for individuals with mental illness (e.g., medications, a variety of outpatient treatment settings, and effective modes of rehabilitation and support) have benefited many patients, the treatment of serious psychiatric conditions often continues to require the availability of inpatient care (NAMI, 1997).
Several health plans have designed innovative programs intended to provide better care for individuals with chronic conditions, and further demonstration and evaluation of such programs should be encouraged. Examples of these unique programs include (AAHP, 1998):
Other populations beyond individuals with chronic conditions also face vulnerabilities that should be addressed in designing health care delivery systems. Delivery systems need to ensure access to the specific types of care that are needed by subgroups of the population, including women's health care, geriatric care, and pediatric care. The availability of culturally sensitive health care professionals and systems is particularly important for patients with communication barriers as well as for racial and ethnic minorities (as further discussed in Chapter 13). Telemedicine technologies, public programs that provide incentives for health care professionals to practice in underserved rural areas, and the availability of prehospital emergency services are delivery system characteristics that have the potential to improve health care delivery for patients whose location poses a barrier to accessing quality care. In addition, certain types of providers, including academic health centers and community health centers, have played an especially important role in delivering comprehensive, high-quality care to vulnerable populations who otherwise could be underserved. Changes in the health care system that affect those organizations' ability to continue in this role have the potential to increase the problems of access to appropriate care that vulnerable groups disproportionately face.
Finally, establishing national aims for improvement, while not targeted specifically to vulnerable populations, is intended to stimulate efforts to improve the quality of health care delivery (see Chapter 3). The setting of aims, while national in focus, should be sufficiently robust to reflect the needs of specific vulnerable populations and localities. This can be achieved through establishing specific objectives within the broader aims that reflect the unique needs of vulnerable populations, and ensuring that the tracking of national aims can support efforts to identify particular areas of concern to local areas and vulnerable populations.
Including vulnerable populations in general strategies for quality measurement is likely to be more sustainable over the long run and sends the important signal that evaluating quality for vulnerable populations is equally, if not more, important. This strategy allows comparisons between vulnerable and general populations when the same measures are used. Such approaches may be more efficient if special sampling procedures can augment a generally applied measure so that evaluating problems for vulnerable populations can be done simultaneously.
There are a few reasons, however, why targeted approaches might be necessary. For persons vulnerable due to economic circumstances, the key to including them in monitoring systems is the availability of variables to identify such persons and methods for bringing data on their patterns of utilization into integrated data systems (e.g., the experiences of uninsured persons who do not file claims). For persons vulnerable due to health status, the key to inclusion in monitoring is the expansion of appropriate criteria for evaluating their care and the development of methods that can support analyses of quality problems using small samples. For persons who are vulnerable due to communication challenges, the key to inclusion will be the development of measurement tools that can be used with such populations.
Different quality measures needed. In some cases, different quality measures may need to be used to assess the care provided to vulnerable populations. Certain health care problems experienced by vulnerable populations differ from those encountered by others in the health care system (either by their nature or in the frequency with which such problems are encountered), and will require a different set of measures to evaluate the quality of care they receive. For example, evaluating the quality of care delivered to persons with certain rare conditions may require developing clinical measures specific to the particular condition (e.g., sickle cell disease). In other cases, existing measures might be adapted or refined to better accommodate vulnerable populations. Medicare and Medicaid, as public programs that insure a disproportionate share of many vulnerable populations (e.g., the frail elderly, nonelderly persons with disabilities), should continue to exercise leadership in supporting the development of quality measures to assess the health care delivered to these populations, in instances where the need for special measures is identified.
In efforts to develop new health care quality measures, the deficits in quality that pose the greatest risk to vulnerable populations and the types of measures most likely to identify such deficits should be taken into account. Focusing new measure development on technical process quality has a number of advantages. First, scientifically sound measures of technical process quality are the most sensitive dimensions for providing an early warning of potential threats to health outcomes. A good measure of technical quality is one that is linked to health outcomes— meaning that adhering to the indicator process more often will increase the likelihood of producing better health outcomes. Process monitoring provides an early warning signal. When problems with processes are identified, interventions can be launched to improve processes before many individuals experience poor outcomes. Second, process evaluation allows quality improvement efforts to examine structural and access features that may be contributing to poor quality. Third, technical process is the most difficult area for individuals to evaluate for themselves. Because specialized work must be undertaken to develop scientifically sound process measures, this is an area requiring focused support (McGlynn, 1997).
In choosing areas for measure refinement, translating existing measures, where possible, into additional languages and exploring their relevance for different cultural or ethnic groups is likely to produce a high payoff (McGlynn, 1997). Measures that rely on data collected directly from patients' reports include those that address issues related to access, interpersonal style, communication, patient satisfaction, and some outcomes (e.g., functional status). Rather than developing new measures in these areas, expanding the populations that could be included in such measures and compared with existing national data would produce more information quickly.
Improved measurement methods. Measurement methods that are appropriate or sufficient for evaluating health care quality in the general population may need modification to account for vulnerable groups. There is a need to address existing obstacles to quality measurement for vulnerable populations to advance in this area, including:
Identification of vulnerable populations in existing data sets. Existing data sets used in quality measurement often lack the variables that facilitate identification of vulnerable populations for quality assessment purposes. Routine availability of such information would make it feasible to undertake monitoring of vulnerable persons as a part of quality measurement initiatives more frequently. Methods for identifying vulnerable individuals may also be hampered by efforts to protect their privacy or to shield them from discrimination. For example, most health plans do not routinely collect information on members' income, education, and race; all of these factors can contribute to increased risk of poor quality care, but it is difficult to systematically identify these individuals.
Value of qualitative evaluation methods. Qualitative methods may also prove valuable for identifying and exploring health care quality problems associated with vulnerable populations. Focus groups and case studies are among the approaches that may be more helpful than quantitative approaches under certain circumstances because they may be more sensitive to certain types of quality problems than other methods. These approaches tend to be more resource and labor intensive, and so must be used selectively.
Risk-adjusting payments is especially important for Medicare, Medicaid, and other payers that have many beneficiaries with significant disability or chronic illness. The ongoing health care needs that result from aging, chronic illness, and disability accentuate the importance of quality and the disadvantage of unadjusted rates. With unadjusted average rates, plans have an incentive to avoid improving quality in ways that might attract people with chronic conditions, such as kidney disease, paralysis, cancer, or heart disease, who are likely to need expensive services on an ongoing basis.
In addition to enrolling a large share of individuals with chronic conditions, Medicare and Medicaid's size enables them to widely influence the health care market by paying more for the enrollment of people with greater health care needs and achieve economies of scale in implementing an adjustment system. Some private group purchasers, particularly groups that purchase health coverage collectively, have also recognized the importance of adjusting payments for the health and functional status of enrollees and begun implementing risk-adjusted payments. For example, the Minnesota Business Health Care Action Group (a cooperative including 28 employers covering 250,000 individuals) and the Health Insurance Plan of California (a small-group purchasing pool covering 120,000 individuals) have adopted risk- adjusted payments to health plans based on health status.
Various approaches have been developed to adjust capitation payments to reflect health needs. Medicare and other payers currently use easily available demographic information, including age, sex, and place of residence, to set capitation rates, but these demographic characteristics generally are poor indicators of health and functional status. Other approaches for adjusting capitation rates include those based on data of prior health care expenditures; surveys of self-reported health status or assessments of functional status; and reporting of diagnostic information. While each of these approaches has merits, they also have drawbacks.
While the need to develop feasible and robust adjustment methods has stymied the application of risk-adjusted payments in the past, several diagnostic classification systems that payers need to implement risk-adjusted payment systems are currently available (Ellis et al., 1996; Kronick et al., 1996; Weiner et al., 1996). Beginning expanded use of such systems can serve both the purposes of developing improved adjustment methods and data collection as well as better aligning payment systems to quality care for individuals with chronic illness or disability.
Several State Medicaid programs, including Colorado and Maryland, have implemented risk-adjusted payment, and other States are moving forward soon or are actively engaged in planning. By 1999 it is likely that at least a half-dozen States will be adjusting payments for substantial numbers of beneficiaries (Dreyfus and Kronick, 1997).
The recent Balanced Budget Act of 1997 directs the Health Care Financing Administration (HCFA) to begin data collection in 1998 that will allow the implementation of risk-adjusted payment for Medicare in the year 2000. Prompt movement toward full diagnostic reporting is key to making risk-adjusted payment work. By announcing its intention of moving soon to risk-adjusted payment systems for Medicare, the Federal Government has stimulated the need for improved inpatient diagnostic reporting. Plans are required to report inpatient data including diagnoses in January, with ambulatory data, at the discretion of the Secretary of Health and Human Services, potentially required in July 1998. The validity of ambulatory data in particular needs attention, but the quality of data systems is likely to improve rapidly once they are used for payments and as group purchasers increasingly request this information (see Chapter 14).
To assist Medicare in its transition to risk-adjusted payments, a group of representatives from HCFA, health plans, and Medicare beneficiaries should be convened to develop a broader consensus on adjusting payments to account for differences in enrollees' health or functional status and to help plan key steps in implementation. In addition, implementation should be phased in to protect plans, providers, and beneficiaries from sharp changes in payments and to allow for development of efficient data reporting systems. Finally, HCFA should coordinate with State programs seeking to adopt risk-adjusted payment systems for Medicaid to avoid unnecessary duplication and reduce the data-reporting burdens facing health plans. As Medicare and Medicaid develop further experience with developing and implementing risk-adjusted payment systems, more private payers may find it feasible to also adopt payment systems that more accurately reflect the health and functional status of the populations they cover.
Other payment approaches. Payments to institutional and individual health care providers also should be designed to encourage coverage of cost-effective models of care delivery that have been shown to attain better outcomes (including satisfaction and functional outcomes). Health plans that capitate provider groups should examine whether the groups vary significantly in the health and functional status of their enrollees and whether their payments should be adjusted accordingly. Payments can encourage multidisciplinary, coordinated care by being broadly based among groups of providers and across the continuum of care, rather than fragmented among individual providers for specific services. Similar effects might be achieved through improved coordination of various funding sources for vulnerable groups covered by multiple sources (e.g., persons dually eligible for Medicare and Medicaid coverage). Aligning payments with effective health care practices and preventive services will be an important impetus for promoting evidence-based health care delivery.
Groups vulnerable due to financial or geographical issues may benefit from payment systems designed to reduce these barriers to access. For instance, Medicare currently offers bonus payments to physicians who provide services in geographic areas that have been designated as health professional shortage areas. Furthermore, as a competitive health care market makes paying for uncompensated care increasingly difficult, Medicare, Medicaid, and private plan payment approaches should support safety net providers that provide a disproportionate share of uncompensated care. Vulnerability associated with communication problems may be addressed through payment, in part, by providing reimbursement for translation services, ombuds programs, or other assistance needed to overcome barriers.
Further experimentation with performance-based payment mechanisms can reward health plans and providers that demonstrate delivery of high-quality care. For example, the Pacific Business Group on Health withholds 2 percent of HMO plan payments, with the release of the money dependent on the plan reporting data on selected quality indicators and meeting performance targets in areas such as customer service and rates of various preventive services (e.g., mammography screening and childhood immunization) (Schauffler, Halpin, and Rodriguez, 1996). Similarly, some health plans link physician compensation to quality performance. Performance-based payment systems could explicitly incorporate measures of performance for vulnerable populations to encourage attention to these groups in improvement efforts.
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