Given its limited time and resources, the IOM committee could not address all of the access problems that it would have liked to include in its report. The indicators described in the previous chapter constitute a first effort at balancing the constraints of offering a manageable set of social indicators on the one hand with the desire to represent a broad range of personal health services across the age continuum on the other. Because this baseline report merely sets the stage for continued monitoring, it is anticipated that future adjustments will be made in this basic set by expanding its breadth—not only through refinements in the ways that indicators are measured.
The purpose of this chapter is to present the committee's thinking about important directions for possible additions to the existing set of indicators. Individually, the topics represent access problems that are no less important a priority than those chosen for discussion in Chapter 3. These topics require further exploration because, to a greater or lesser degree, the state of the art of measuring them as an access problem is underdeveloped or because it is unclear whether routine data related to them will be available to track utilization or outcomes.
Box 4-1 lists the indicator topics that the committee has identified for future development. The topics were raised in the context of committee discussion either as concerns about access to a particular type of personal health service that had been omitted from the basic list or as concerns about a potentially vulnerable population group or a disease category. It is clear,
however, that almost any access problem can be characterized on all three of these dimensions. (For example, there are substance abusers who require drug treatment services for their addictive disorders.) Moreover, as Aday (in press) has pointed out, many of the vulnerable populations whose access concerns us as a society have crosscutting needs. For instance, the broad group of alcohol and substance abusers can include high-risk mothers with fetal alcohol syndrome, intravenous drug users with AIDS, mentally ill substance abusers, drug users who attempt suicide, addictive families suffering domestic abuse, homeless people with substance abuse problems, and substance-abusing refugees.
Once a topic has been selected, the major challenge is to conceptualize an identifiable personal health service to serve as a utilization indicator and as an outcome measure that can be related to use or lack of use. The best utilization indicators are those for which there is a fairly well-recognized service intervention with clear guidelines regarding who should receive the service. Good outcome measures must be more than prevalence or incidence rates; they must reveal something about access. The best example is the incidence of a vaccine-preventable disease such as measles. In contrast, the incidence of colds would be difficult to relate to problems in access.
Once past the conceptual stage, it is necessary to identify a source of routine data. Potential data bases must be explored and the quality of the information assessed. As with the indicators in the initial monitoring set, a variety of problems involving data collection frequency, availability, and disaggregation must be confronted.
To illustrate the kind of analysis required, the committee commissioned papers on four of the topics: AIDS, substance abuse, and migrants and the homeless (Appendixes A-C). In fact, these papers go beyond illustration to provide the first strategic steps toward developing access monitoring indicators in these areas of interest.
ACCESS TO HEALTH CARE FOR PEOPLE WITH DISABILITIES
Disabilities as an issue affect every community, neighborhood, and family. Estimates of prevalence vary according to one's definition. A recent IOM report (1991), Disability in America, wrestled with the definitions and concepts surrounding systematic inquiry in this area. As an indication of general orders of magnitude, about 35 million Americans—one person in seven—have physical or mental impairments that interfere with their daily activities. More than 9 million disabled persons have functional limitations so severe that they cannot work, attend school, or maintain a household.
Disabled persons have become a focus of concern with regard to equity of access because of growing understanding about how insurance and other financial barriers are affecting them. Exclusion waivers for those with preexisting health conditions, higher premiums, and denials are ever-present phenomena of the health insurance industry—factors that hit those with disabilities particularly hard. An analysis of the 1984 National Health Interview Survey (NHIS) estimated that 11 percent of the 22.2 million people who are limited in their performance of major activities do not have insurance. The proportion of people with disabilities who rely on public programs in larger than that of the general population. Although the problem of denial of coverage as a consequence of being termed ''medically uninsurable" is not well documented quantitatively, it is clear that employment does not guarantee health insurance coverage. Moreover, health insurance often does not cover the types of services that prevent disabling conditions from worsening or that improve functional ability. The lack of access to services that promote community care may foster greater use of institutionalization than is necessary. Because of the inadequacies of private health insurance, it is believed that a substantial number of disabled persons are forced to obtain supplemental security income or social security disability insurance in order to have health insurance coverage.
The current set of indicators captures one dimension of disability in its measurement of the use of physician services by those in poor to fair health. However, many other disabled individuals are in good to excellent health despite their limitations. Although these individuals can be identified by the NHIS, the utilization issue of particular relevance to future access monitoring involves those services related to the fact of being disabled. A variety of policy-relevant research questions have been asked in this vein-for example, to what services should persons with disability have access? The answer depends at least partly on the costs of such services relative to their benefits and the quality issue of how outcomes should be measured.
These factors cannot be readily translated into indicators. For one thing, caring for persons with disabilities involves more than personal health
care services, with the lines between social and health services often becoming blurred. It is generally believed that the character of these services and how they are organized make a difference for outcome; specifically, they need to be comprehensive, coordinated, and family centered. Those outcomes will most likely be measured in terms of quality of life and the prevention of secondary disabling disease conditions.
Enactment of the Americans with Disabilities Act further inspired the growing desire by policymakers and researchers to have better and more objective data on disabilities. During the course of the IOM Access Monitoring Project, the National Center for Health Statistics was formulating plans to conduct a 1993–1994 supplement to the NHIS that focused on the noninstitutionalized disabled population. This survey should provide an opportunity to clarify definitions and measurement tools that would be instrumental in developing a practical access indicator for disability.
The inclusion of a separate chapter on violent and abusive behavior in the publication Healthy People 2000 (U.S. Public Health Service, 1991) reflects a growing recognition of the problem as one that must be addressed not only by the legal, educational, and social welfare systems but by the health care system as well. The rubric of violent and abusive behavior can include the term "family violence," referring to child abuse, spousal abuse (especially battered women), and elder abuse.
Progress in developing an access indicator for this problem depends on ientifying a generally agreed-upon personal health service that should be available to all who are at risk. For example, one of the Healthy People 2000 objectives calls for the nation to "increase to at least 30 the number of states in which at least 50 percent of the children identified as neglected or physically or sexually abused receive physical and mental evaluation with appropriate follow-up as a means of breaking the intergenerational cycle of abuse." There are few patient outcome studies on the impact of medical interventions for battered women, but it seems clear that, at a minimum, referral to supportive services outside the personal health care system ought to be part of a standard of care.
Another facet of developing an indicator must be consideration of the potential barriers to access to services and how they might be measured. For example, battering is a major factor in illness and injury among women, but it is often overlooked by medical professionals. Some studies have shown that between 17 and 25 percent of all emergency department visits involve battered women, but emergency care providers typically identify less than 5 percent of the women with injuries or illnesses suggestive of abuse (McLeer and Anwar, 1989). In fact, the majority of battering-related
illnesses and injuries are nontraumatic and are likely to be seen in primary care settings (Stark, 1981). Lack of provider education and the absence of institutional protocols in delivery sites such as emergency rooms interfere with recognition of domestic violence as a medical problem and consequently preclude access to needed services. Moreover, access to health care for battered women is often controlled by their abusers; this is a structural barrier that prevents access to needed services. Financial and personal or cultural barriers to obtaining services also must be explored to determine whether they create inequities among subgroups in the population.
Emergency services are a vital aspect of access. All groups, middle class as well as indigent, want to know that such services are available if needed and that they will function quickly and effectively. A report on access should tell citizens how well those who experience trauma and medical emergencies are likely to be served.
The minimum elements of an emergency medical system include the prehospital phase (e.g., a communications system, ambulances, helicopters, emergency medical personnel trained at various levels) and different categories of emergency departments, from hospitals that can stabilize and transfer patients to those that provide definitive care. A study by West et al. (1988) revealed that only two states had all components and statewide coverage of the eight essential components of a regional trauma system based on criteria set forth by the American College of Surgeons.
Any effort to develop an indicator of access to emergency care must begin by specifying performance measures that could indicate timeliness (e.g., response times) and effectiveness (e.g., mortality). Consideration must also be given to whether data bases exist to apply performance measures in reliable and valid ways. Because emergency systems are organized either locally or on a statewide basis, geographic comparisons would be required. It is possible that response times in poor neighborhoods may not be as fast as those in higher-income areas, creating an equity problem that should be measured at the individual or zip code level. Differing patterns of emergency department use by income and issues of inappropriate transfer among hospitals also raise questions about equity that might be monitored.
POST-ACUTE-CARE SERVICES FOR THE ELDERLY
Systemwide utilization data to track the elderly through parts of the health care system are not readily available (Densen, 1987). Questions that have been raised include the following: Under what conditions does a person receive a range of home health services versus being admitted to a
nursing home? How can one conceptualize and measure the effect of access barriers on who receives what types of postacute services?
The National Medical Care Expenditure Survey confirmed what other surveys of the impaired elderly have found: in general, there are low levels of use of formal home and community services (Short and Leon, 1990). Home care, the most commonly used service, was used regularly by only 19.7 percent of those over 65 with functional difficulties. Whether low levels of use reflect the need for services, or financial barriers, or a lack of local resources is open to further research, according to the authors. Among those who use these services, however, having private insurance coverage in addition to Medicare did not make a difference in use. In addition, although differences were apparent in levels of use by region of the country, residence in a densely populated area did not affect the use of home care.
Developing an access indicator for home care and other types of long-term care will require better understanding of the characteristics that define a need for these services. To detect equity problems, it will be necessary first to classify people at risk according to their functional status, resource availability, and living arrangements so that the effects of financial and other access barriers can be measured. To date, most data on the use of these services have been available only through special surveys. A mechanism for regular reporting would be required to track access over time.
From 1982 to 1988 prescription drug prices were the highest-inflated component of the health care sector. Today, in comparison, their share of the rapidly growing burden of health care expenditures has begun to shrink, although it is still sizable. On the one hand, third-party payment has grown to surpass out-of-pocket payment as the major revenue source for prescriptions (Schondelmeyer and Thomas, 1990). On the other hand, those who are uninsured or underinsured are likely to have an increasingly difficult time meeting these costs. This problem was a major motivation behind passage of a drug benefit in the Medicare Catastrophic Coverage Act of 1988 (P.L. 100–360). Analysis of data from the National Medical Care Expenditure Survey shows that Medicare beneficiaries without supplemental private insurance are about 10 percent more likely not to have had a drug prescribed than those with insurance (Moeller and Mathiowetz, 1989).
Conceptually, the major rationale for developing an indicator for access to prescription drugs would be to gain greater insight into the problems of those who may be able to see a physician but who do not follow the prescribed course of drug therapy. The hypothesis would be that lack of insurance, income, or both prevents the patient from purchasing prescribed medications.
The inability to maintain a drug regimen could be the intervening mechanism that explains why some patients with chronic disease contribute to high rates of hospital admission for the ambulatory-care-sensitive conditions in the committee's primary list of indicators (Moeller and Mathiowetz, 1989).
Aday, L. A. In press. Health and Health Care of Vulnerable Populations . San Francisco: Jossey-Bass.
Densen, P. 1987. The elderly and the health care system: Another perspective. Milbank Quarterly 65:614–638.
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McLeer, S. V., and Anwar, R. 1989. A study of battered women in an emergency department. American Journal of Public Health 79:65–66.
Moeller, J. F., and Mathiowetz, N. 1989. Prescribed Medicines: A Summary of Use and Expenditures by Medicare Beneficiaries. National Medical Expenditure Survey, Research Findings No. 3. Washington, D.C.: Agency for Health Care Policy and Research.
Schondelmeyer, S., and Thomas, J. 1990. Trends in retail prescription expenditures. Health Affairs 9:131–145.
Short, P. F., and Leon, J. 1990. Use of Home and Community Services by Persons Ages 65 and Older with Functional Difficulties. National Medical Expenditures Survey, Research Findings No. 5. Washington, D.C.: Agency for Health Care Policy and Research.
Stark, E. 1981. Wife abuse in the medical setting: An introduction for health personnel. Monograph No. 7. Washington, D.C.: U.S. Department of Health and Human Services.
U.S. Public Health Service. 1991. Healthy People: National Health Promotion and Disease Prevention Objectives. DHHS Pub. No. (PHS) 91-50212. Washington, D.C.: U.S. Government Printing Office.
West, J. G., Williams, M. J., Trunkey, D. D., and Wolferth, C. C., Jr. 1988. Trauma systems, current status—Future challenges. Journal of the American Medical Association 259:3597–3600.