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8
Improved Decisionmaking by Patients and Clinicians: A Response

John Rother

I begin by commending the Institute of Medicine (IOM) and this study for truly landmark work (IOM, 1990). On behalf of the American Association of Retired Persons (AARP), I welcome its findings and find much to support.

In this paper, I want first to share some patient perspectives on health care quality gleaned from AARP's extensive public opinion survey activities. Second, I want to address some patient information issues that the IOM report surfaces in its analytic and prescriptive chapters.

PATIENT PERSPECTIVES ON HEALTH CARE QUALITY

AARP conducts numerous public opinion polls. Some of its findings with regard to health care issues are instructive as we examine options for a new quality assurance strategy for Medicare. Increasingly, the public, including Medicare beneficiaries, perceives health care to be a business; ''customer'' satisfaction is seen as a critical dimension of the system's performance. AARP's polls have found that about 80 percent of the population across the age spectrum say that they are generally satisfied with the quality of care they receive. At the same time, respondents voice fears about changes taking place in health care today, fears about costs that are skyrocketing, and fears that quality in health care is not going to be maintained in the future.

If we probe the polls' findings, we find that from a lay point of view people do not think of quality simply in terms of the physician-patient or hospital-patient interaction. They think of quality also in terms of this question: How does the health care system relate to me as a whole person? Is someone taking responsibility for my situation in its entirety?

In other words, when we ask people what they consider to be the most



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Medicare: New Directions in Quality Assurance 8 Improved Decisionmaking by Patients and Clinicians: A Response John Rother I begin by commending the Institute of Medicine (IOM) and this study for truly landmark work (IOM, 1990). On behalf of the American Association of Retired Persons (AARP), I welcome its findings and find much to support. In this paper, I want first to share some patient perspectives on health care quality gleaned from AARP's extensive public opinion survey activities. Second, I want to address some patient information issues that the IOM report surfaces in its analytic and prescriptive chapters. PATIENT PERSPECTIVES ON HEALTH CARE QUALITY AARP conducts numerous public opinion polls. Some of its findings with regard to health care issues are instructive as we examine options for a new quality assurance strategy for Medicare. Increasingly, the public, including Medicare beneficiaries, perceives health care to be a business; ''customer'' satisfaction is seen as a critical dimension of the system's performance. AARP's polls have found that about 80 percent of the population across the age spectrum say that they are generally satisfied with the quality of care they receive. At the same time, respondents voice fears about changes taking place in health care today, fears about costs that are skyrocketing, and fears that quality in health care is not going to be maintained in the future. If we probe the polls' findings, we find that from a lay point of view people do not think of quality simply in terms of the physician-patient or hospital-patient interaction. They think of quality also in terms of this question: How does the health care system relate to me as a whole person? Is someone taking responsibility for my situation in its entirety? In other words, when we ask people what they consider to be the most

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Medicare: New Directions in Quality Assurance important factor in choosing a primary care physician, the response is neither cost nor location; by far the factor that people cite most often is having a doctor who will take the time to explain things. I translate that into not just a desire for information that I, the patient, can get impersonally from books and other sources; it is also a desire to be treated by someone who relates to me as a whole person, who takes the time to understand my situation, as well as the social and medical-psychological aspects of care. As important as health care outcomes are, I think these patient preferences argue for a focus on the processes of care as well. We know from other studies that trust in the process, the hope that the process will be successful, and the sense that one is being cared for—these intangibles—are often central to the likely success of medical intervention. A corollary point is also pertinent. Just as the "whole" person is central to the idea of quality, a quality assurance mechanism must measure how the whole system relates to that person. Fragmentary quality assessment and quality assurance, in other words, are a problem. We need to look at quality across inpatient, outpatient, long-term, and home health care settings. A major source of a patient's frustration with the caregiving system today is the lack of coordination, the absence of a guide to help him or her through the health care maze. If we are serious about quality, we have to talk not only about reimbursement, but also about a coordinated system of care that allows us to look at quality as the patient experiences the various components of the delivery system. We must create a system that allows us to judge the entire spectrum of inputs, rather than just the input from a particular provider in a particular setting. Ultimately, I think, that leads to a call for some fairly major changes in the way our health care system is structured and financed. In this connection, I should note that an effective, well-coordinated quality assurance program will itself require adequate initial investment and ongoing financial support. The benefit-cost payoff, however, in terms of overall health system savings promises to be substantial. INFORMATION NEEDS Given the evolving nature of the doctor-patient relationship, the IOM is to be strongly commended for explicitly recognizing the centrality of patient interests and desires in its definition of quality. AARP believes that two major categories of information needs are pertinent to the achievement of greater patient autonomy and involvement in decisionmaking: treatment information, and individual provider and practitioner performance information. With regard to the first category, treatment information, the section of the IOM report on capacity building is particularly welcome. The report's

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Medicare: New Directions in Quality Assurance emphasis on the federal funding, sponsorship, or production of audiovisual materials for distribution to Medicare beneficiaries—in the form of newsletters, brochures, television programs, tapes, and the like—is right on target. The interactive information system envisioned by the IOM is likely to require more time and greater sensitivity (particularly to differences among patients) on the part of practitioners. We believe that both patient and physician will benefit from increased patient participation in decisionmaking. Wennberg's recent interactive video experiments are encouraging examples of what can be achieved in this direction (see Wennberg, 1991). It is easy to overestimate how well people can absorb and respond to printed material. In fact, the American public does not respond primarily to information in printed form; an estimated 70 percent of the population gets 100 percent of its information from television. Certainly, we need to look at a whole range of ways to increase the absorption of information. Moreover, people who are not themselves health care professionals often do not focus on information until a decision must be made. Therefore, information needs to be available to patients at decisionmaking times. AARP believes that an especially significant and useful source of patient information will emanate from current efforts to produce new practice guidelines. Patient experiences and preferences about treatment, outcomes, and patterns of care must be factored into both developing and updating these guidelines. In accordance with the intent of the statute mandating the development of these guidelines, they must be shared with the patient in a user-friendly form; patients need to know the potential risks and benefits of treatment options, and the potential consequences of taking no action. With regard to the matter of individual provider and practitioner performance data, AARP believes that increased dissemination will further the goal of informed patient decisionmaking. It is important, of course, to continue to improve the measurement tools used to create consumer information. In particular, efforts to adjust raw data to account for the severity of illness should be intensified. Moreover, not every conceivable statistic on provider performance needs to be released immediately. What is critical is a commitment to a policy of disclosure of institutional, physician, PRO/MQRO,1 and government-held data that include mortality rates, volume statistics, readmission rates, and other outcomes information as it becomes available, including considerations of functional status and quality of life. The actual implementation of a data disclosure policy will occur along a time and validation continuum. Thus, outlier performance warranting PRO or state licensure board sanctions should be publicized quickly and clearly. 1   Editors' Note: The reference is to the existing Medicare Peer Review Organizations (PROs) and the IOM's proposed Medicare Quality Review Organizations (MQROs).

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Medicare: New Directions in Quality Assurance At the same time, as the IOM study reminds us, it is important to publicly recognize examples of excellent quality. A publicized reward system can be just as important a driver on quality as a punishment system. ISSUES CONCERNING PATIENT INFORMATION Viewing the IOM report as a whole, we detect some ambivalence about data disclosure. The committee states that although "a major principle of the MPAQ [Medicare Program to Assure Quality] is that reliable, valid, and useful data ought to be available to or placed in the public domain...a corollary is that misleading information and poorly presented data are harmful to providers, and ultimately, to the public. We take the position that forestalling the latter takes precedence over accomplishing the former" (emphasis added). In another vein, the report points out that "feedback and data reporting have three primary dimensions: information made available to internal quality assurance programs and practitioners, to the public, and to policymakers. Although making data available in a timely way to the latter audiences is an important goal, we believe that designing effective mechanisms for giving information back to practitioners and provider institutions (feedback) is central to our proposed quality assurance program" (emphasis added). Notwithstanding the need for responsible data collection, presentation, and dissemination, these kinds of statements have the collective effect of qualifying the committee's avowed view of the informed patient as crucial to a quality assurance strategy. We should not be so paternalistic as to assume that people will fail to take into account the fact that mortality figures, for example, are a very rough indication of quality. Were we to decide to withhold data until we were absolutely satisfied that they were 100 percent accurate, we would be waiting a very long time. I would urge the IOM to adhere to the overall philosophy that data disclosure is an important goal, one that will work well only if there is broad dissemination, not only to providers but also to the public and to the policymaking community. The IOM envisions one additional important dimension to the patient and consumer information strategy: quality assurance systems themselves need a healthy dose of informed consumer input and oversight to ensure accountability and credibility. This has been true with the Peer Review Organization program, and it will remain true with whatever mix of external and internal review emerges from current policy debates. The Medicare population that we are going to be dealing with in the future consists of individuals whose attitudes and orientation to authority were shaped by the social and cultural forces of the 1950s and 1960s. These Medicare beneficiaries are likely, therefore, to insist upon a proactive

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Medicare: New Directions in Quality Assurance role in decisions that affect them personally; they are also likely to be willing to challenge traditional authority figures. SUMMARY Realization of greater patient involvement in the decisionmaking process, a vision that the IOM and AARP share, holds much promise for fulfilling beneficiaries' hopes and meeting their needs. We look forward to working with the IOM, Congress, the administration, and the provider and beneficiary communities to achieve that end. REFERENCES Institute of Medicine. Medicare: A Strategy for Quality Assurance. Volumes I and II. Lohr, K.N., ed. Washington, D.C.: National Academy Press, 1990. Wennberg, J.E. A Patient Outcomes Orientation: A Response. Pp. 73-78 in Medicare: New Directions in Quality Assurance. Donaldson, M.S., Harris-Wehling, J., and Lohr, K.N., eds. Washington, D.C.: National Academy Press, 1991.