A key question to answer in the coming decade is “How can the unique needs and desires of each person be appropriately assessed and addressed in a rapidly changing health care environment?” Health outcomes research has the potential of providing the measurement tools to make that assessment and the analytic knowledge to suggest ways of addressing the challenges posed.
This report presents an agenda of health outcomes research for older people, proposed to be undertaken over the next 10 years. As used in this report, health outcomes research is research that studies the end results of the structure and processes of health care on the health and well-being of patients and populations. Its objectives are to provide information and insights to guide health care improvements, promote efficiency, and reduce costs. The research itself can be conducted on many different levels, ranging from that of an individual’s health status to that of the broadly defined health care system, and usually employs a multidisciplinary approach.
The term “outcomes” has come into wide use in a variety of contexts. Health outcomes can also be represented by specific measures, including those that focus on:
clinical signs or symptoms (physiologic and biologic);
well-being or mental and emotional functioning;
physical, cognitive, and social functioning;
satisfaction with care;
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Health Outcomes for Older People: Questions for the Coming Decade Introduction and Background HEALTH OUTCOMES RESEARCH FOR OLDER PEOPLE A key question to answer in the coming decade is “How can the unique needs and desires of each person be appropriately assessed and addressed in a rapidly changing health care environment?” Health outcomes research has the potential of providing the measurement tools to make that assessment and the analytic knowledge to suggest ways of addressing the challenges posed. This report presents an agenda of health outcomes research for older people, proposed to be undertaken over the next 10 years. As used in this report, health outcomes research is research that studies the end results of the structure and processes of health care on the health and well-being of patients and populations. Its objectives are to provide information and insights to guide health care improvements, promote efficiency, and reduce costs. The research itself can be conducted on many different levels, ranging from that of an individual’s health status to that of the broadly defined health care system, and usually employs a multidisciplinary approach. The term “outcomes” has come into wide use in a variety of contexts. Health outcomes can also be represented by specific measures, including those that focus on: clinical signs or symptoms (physiologic and biologic); well-being or mental and emotional functioning; physical, cognitive, and social functioning; satisfaction with care;
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Health Outcomes for Older People: Questions for the Coming Decade health-related quality of life; and costs and appropriate use of resources. Beyond these basic terms and concepts, the formulation of an outcomes research agenda requires a consideration of what the future is likely to bring for America’s older population, its health care system, and the field of health outcomes research. An Expanding Older Population America’s demographic future is relatively easy to predict. On May 19, 2011, “baby boomers” start turning 65 (Time, 1986). In that year, those over age 65 will constitute nearly 14 percent of the U.S. population and are projected to increase to over 20 percent by the year 2030 (U.S. Bureau of the Census, 1996). In contrast, today 12.8 percent of the population are in this age group. The aging boomers, now in their middle age, will continue to have a significant impact on American society and to challenge the health care delivery and financing systems. On the furthest end of the aging spectrum, the demographic impact of an aging population is even more striking. The oldest of the old, people 85 years old and over, are the fastest growing segment of the older population. Those over the age of 85 currently make up 1.4 percent of the population, a figure that will increase to 2.4 percent by the year 2030. This is significant because this segment typically has the most health impairments and highest per capita health costs. Women are likely to remain disproportionately represented in older age groups, especially the oldest of the old. Today women make up nearly 60 percent of the elderly population and account for more than 70 percent of the oldest of the old. Although the ratio of elderly men to women is expected to narrow slowly over the coming decades, in the year 2030 women will still account for more than 54 percent of the elderly population and more than 64 percent of those age 85 and older. The older population is, moreover, projected to be much more racially and ethnically diverse than ever before. The current elderly population is predominantly white. However, demographers project that by the middle of the next century the numbers of elderly blacks will more than triple, increasing their proportion of the total elderly population from 8 to 10 percent. And more dramatically, the Hispanic population will increase nearly 11-fold, rising from less than 4 percent of the elderly to nearly 16 percent. The projected increases in minority population will cause the proportion of white elderly to shrink from more than 86 percent to less than 67 percent. While many older people lead robust and active lives in relatively good health, some general characteristics tend to differentiate them from younger
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Health Outcomes for Older People: Questions for the Coming Decade people. These factors include a greater likelihood of having multiple clinical conditions (and subsequent use of multiple medications) and a variety of sensory, mobility, and cognitive impairments (e.g., poor vision or hearing, gait instability). Health outcomes related to quality-of-life issues become more striking as one ages, particularly as older people and their families confront issues about dying and care at the end of life. Many older people live alone, which, when overlaid with poor health, increases their sense of vulnerability and raises concerns about their ability to get needed support for tasks ranging from going to medical appointments to preparing food to having someone to discuss their preferences about care. Again, these are general characteristics. The older population, with an age range spanning more than 30 years, is quite diverse and heterogeneous. Changing Health Care Environment To assert that today’s health care environment is dynamic is to risk understatement. The pressure to contain costs and add value to health care spending has led to new ways of paying health care providers and practitioners, new ways of managing patient access to health care providers, and new ways of delivering services. Significant restructuring is being proposed for the Medicare and Medicaid programs, which finance considerable portions of the health care costs for older Americans. For example, the incentives for Medicare beneficiaries to join managed care plans are likely to become stronger and may, depending on their specific characteristics, dramatically restructure the current Medicare program. Many state Medicaid programs have already moved in this direction. Hospitals, nursing facilities, home health agencies, and health maintenance organizations are preparing to meet the demands of the changing size and composition of the older population in an environment likely to be characterized by major resource constraints. Policymakers continue to examine ways to ensure quality and accessibility of care in such an environment (IOM, 1990, 1994; WHCOA, 1996). How the growing older population interacts with the health care system is also changing. More than ever before, the attitudes of older people and their families about outcomes of health care and the processes used to achieve them are being identified and taken into account. The demographic trends described above are likely to contribute to critical change in practices and expectations about health care. Field of Health Outcomes Research The field of health outcomes research itself is also dynamic. In the past two decades, and especially in the past five years, major advances have been made—
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Health Outcomes for Older People: Questions for the Coming Decade particularly in assessing functional health status and quality-of-life outcomes. The progress has come principally on two fronts: an increased understanding of the need to measure a full range of health states, using information directly from individuals (or their proxies) so that the effects of health care and health care policy can be more fully and accurately discerned; and an expanded inventory of measurement tools, including an array of reliable, valid, and practical questionnaires and other instruments to assess health outcomes that are meaningful to people in their daily lives. The results of health outcomes research are used in many ways. Individuals can use them to help make their own decisions about which course of treatment to follow or which health plan to join. Practitioners can use models developed by health outcomes researchers to predict a patient’s future level of functioning and to select appropriate interventions. Administrators of health plans and integrated delivery systems can study ways to reduce costs while improving the quality of care delivery. Policymakers can devise reimbursement incentives to help achieve desired outcomes. Health outcomes research is not without its critics. For example, some question certain uses of quality-of-life measures out of concern that they may denigrate those with disabilities. Others express concerns about manipulation of patient satisfaction measures, neglect of process-of-care measures, and inattention to aspects of health for which data are not readily available. Brook et al. (1996) argue that process measures are more sensitive measures of quality of care because poor outcomes may not occur each time something is done incorrectly or something is omitted that should have been done, such as giving thrombolytic therapy to appropriate myocardial patients. In addition, outcomes often take a long time to occur and can require very large samples to measure a statistically significant effect. Health outcomes research is funded both publicly and privately. Within the federal government, the Agency for Health Care Policy and Research (AHCPR) has been designated the lead agency with responsibility for funding health outcomes research. Under AHCPR’s stewardship, major advances in the field of health outcomes research have been supported and the results widely disseminated. Despite recent significant budget cutbacks, AHCPR continues to fund several Patient Outcomes Research Teams (PORTs) through its Medical Treatment Effectiveness Program. PORTs allow multidisciplinary teams of researchers to focus their combined expertise on the outcomes and costs of alternative practice patterns in treating a particular health condition. Elsewhere in the federal government, health outcomes research is being funded by a variety of agencies and departments, including the Health Care Financing Administration, the National Institutes of Health, the Health Resources
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Health Outcomes for Older People: Questions for the Coming Decade and Services Administration, and the Department of Veterans Affairs. It is difficult to identify the amount of overall federal research dollars devoted specifically to health outcomes for older individuals. In general, federal funding for health services research (of which health outcomes research can be considered a part) is much lower than for federal biomedical research; in fiscal year 1994, federal health services research received $470 million in support compared to $10 billion for federal biomedical research. Certainly some biomedical research can be considered health outcomes research, but it often only examines traditional outcomes such as mortality and typically does not take into account the more sophisticated measures of health status and functional outcomes that are particularly important in the older population. Additionally, older people are often deliberately excluded from this type of clinical research. Some state and local governments also support health outcomes research, most notably California, New York, and Pennsylvania. Likewise, private foundations, including the Commonwealth, Greenwall, John A.Hartford, Henry J.Kaiser Family, Pew Charitable Trusts, and Robert Wood Johnson foundations, have supported important research examining health outcomes for older individuals. Finally, private health care organizations—large and small—continue to support certain kinds of health outcomes research to analyze and improve health care for older people and their families. ORIGINS OF THIS REPORT AND STUDY APPROACH A rich set of research questions emerges from the combination of the important policy questions introduced above. Early in 1996, the Greenwall Foundation approached the Institute of Medicine (IOM) about the possibility of convening an expert committee to examine these questions and to propose an agenda for health outcomes research focused on older people. The Greenwall Foundation, founded in 1949 and based in New York City, typically funds medical research in bone cancer, diabetes, and geriatrics. It also funds studies of bioethics and the moral dilemmas involved in medical decisionmaking, which led to its current interest in health outcomes research. Rather than fund individual health outcomes research projects, officials of the Greenwall Foundation felt it would be more beneficial to promote and help fund projects that were part of a coherent and comprehensive strategy of research designed to truly advance the field of health outcomes research. The IOM committee that developed this agenda understood that it would be the basis for discussions with other foundations and agencies and for efforts to leverage funds to achieve the greatest benefit on the health outcomes of older people. Preliminary ideas for the committee’s work and workshop were formulated during a special planning meeting sponsored by the IOM in April 1996. After that meeting, the IOM appointed a 17-member committee to oversee the entire process. The committee included individuals with expertise in geriatrics and
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Health Outcomes for Older People: Questions for the Coming Decade gerontology, nursing, social work, dentistry, epidemiology, consumer and patient advocacy, health care financing and delivery, and health outcomes research (see page iii). The committee sponsored a one-day invitational workshop in Washington, D.C. (see Appendix for the workshop agenda and participants list) and met the following day to discuss the information presented and develop their recommendations. The committee then reviewed and commented on successive drafts of the final report. Several processes informed the committee’s work. These involved a thorough review of the relevant literature; presentations given at the invitational workshop that included input from consumers, leading researchers, and government officials; commissioned papers; and the actual deliberations of the committee and the discussion of members’ expert opinions. These processes helped to identify 10 recommendations for research issues and 5 recommendations for research infrastructure needs. In evaluating their recommendations, the committee considered the potential of the ensuing research to: improve individuals’ health outcomes, affect a large population, address important social or ethical questions, affect policy decisions, enhance the national capacity for health outcomes research, or be readily conducted. The committee recognizes that the cost of care is an outcome of considerable importance. Clinicians routinely include costs in their consideration of outcomes when recommending alternative therapies to older patients and families. Government and private payers are acutely focused on issues of cost because failure to use resources wisely will ultimately reduce the availability of care, access to care, and the effectiveness of care. For those reasons, the committee recommends that all outcomes research attempt to determine the costs associated with the outcomes achieved. This information will help patients, practitioners, and policymakers to make more informed decisions about the trade-offs involved in achieving desired outcomes. In a similar vein, the committee does not specifically single out the need for research on more traditional mortality and preventable morbidity measures. These measures have been and continue to be important; they also have been and continue to be the subject of much research. The committee decided, therefore, to highlight areas that have received less attention. The committee considered several other research agendas on aging issues that have been developed by other groups. A 1991 IOM publication, Extending Life, Enhancing Life: A National Research Agenda on Aging, presented a 20-year agenda of age-related research. In 1995, the federal Task Force on Aging
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Health Outcomes for Older People: Questions for the Coming Decade Research released Threshold of Discovery, a prioritized agenda of some 192 research recommendations for the federal government to undertake within the next five years. Both of these research agendas broadly covered all aspects of aging from basic biomedical research to assistive technology development to studies of transportation needs. As such, neither focused specifically on health outcomes research per se. Nonetheless, these agendas have been useful in heightening awareness of research needs in the entire field of aging and in building consensus about research priorities. Indeed, substantial progress has been made in carrying out some of the research recommended, and new priorities have surfaced. AUDIENCE FOR THIS REPORT Implementation of the recommendations for research contained in this report will require the combined efforts of many individuals and organizations. Funding will need to come from federal, state, and local governments, private industry, and foundations. Therefore, the research recommendations contained in this report are aimed at a variety of very different potential funders. The committee recognized that no single funder would be likely to support all the research identified here; each funder will have different priorities and research interests. The research itself will need to be conducted by health outcomes researchers working in a variety of health care organizations, universities, government agencies, and private-sector accreditation organizations—sometimes working independently, sometimes working collaboratively. ORGANIZATION OF THIS REPORT An “agenda” can be defined as “a list of things to be done,” and it is in this sense of the word that the current work is presented. Final recommendations have been organized into two main categories: research issues and research infrastructure needs. All recommendations selected for this report have been deemed to be of a high priority to pursue over the next 10 years; the committee did not rank order the recommendations. Thus, the order in which they are presented here does not imply any priorities among them. Naturally, some overlap exists among the various recommendations, and the committee has acknowledged interrelations at several points. Each recommendation is listed individually in the following standard format: Recommendation, Rationale, Background, and Examples of Needed Research.
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Health Outcomes for Older People: Questions for the Coming Decade A bibliography, which appears at the end of the report, provides selected references pertinent to each recommendation. These references supplement those cited in the text, and they are listed at the end of each chapter. Their inclusion is intended to guide readers to a few key resources on particular areas. Again, the reference list in the bibliography is not meant to provide an exhaustive review. REFERENCES Brook, R.H., C.J.Kamberg, and E.A.McGlynn. Health System Reform and Quality. Journal of the American Medical Association 276(6):476–480, 1996. IOM (Institute of Medicine). Medicare: A Strategy for Quality Assurance. K.Lohr, ed. Washington, D.C.: National Academy Press, 1990. IOM. Extending Life, Enhancing Life: A National Research Agenda on Aging. E.T.Lonergan, ed. Washington, D.C.: National Academy Press, 1991. IOM. Access to Health Care in America. M.Millman, ed. Washington, D.C.: National Academy Press, 1994. Task Force on Aging Research. The Threshold of Discovery: Future Directions for Research on Aging. Administrative Document. Report of the Task Force on Aging Research. Washington, D.C.: Department of Health and Human Services, April 1995. Time, The Baby Boomers Turn 40. May 19, 1986. U.S. Bureau of the Census. Current Population Reports, Series P25–1130. Population Projections of the United States by Age, Sex, Race, and Hispanic Origin: 1995 to 2050. Washington, D.C.: U.S. Government Printing Office, 1996. White House Conference on Aging (WHCOA). The Road to an Aging Policy for the 21st Century: Final Report of the 1995 White House Conference on Aging. Washington, D.C.: WHCOA, 1996.