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What Would Ideal Care Look Like?



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--> 4 What Would Ideal Care Look Like?

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--> Introduction Jordan J. Cohen Halsted Holman's contribution was solicited to help the committee focus on the optimal characteristics of any future health care system. He begins with the observation that our present system is the byproduct of an era dominated by acute disease. In such an era the prevailing paradigm centers on accurate diagnosis and specific treatment to effect cure or control of a limited episode of disease. Physicians practicing within this paradigm possess the bulk of the knowledge, and patients tend to be passive recipients of medical care. This system, in Holman's view, is ill-suited to deal with the rapidly changing realities of health care. In his words, "the system is no longer confronted primarily with the problems it was created to solve." Holman reminds us that we are entering an entirely different era, one dominated not by acute disease but by chronic disease, an era in which the prevailing paradigm is management of an unpredictably undulating course of illness. In this context he offers us a useful conceptual distinction between "disease" (the biologic entity) and "illness" (the disease coupled with all of its morbid, emotional, social, and economic consequences). In an era dominated by chronic diseases such as the rheumatic conditions under consideration in this study, physicians do not possess definitive knowledge. Indeed, patients who are forced to live day by day with their chronic illness bring to the therapeutic relationship as much if not more knowledge of the problems at hand than does the physician. As a consequence, effective parmerships between doctor and patient become the linchpins of quality care. In the later portions of his paper, Holman delineates the distinct but interdependent roles of the patient, the physician delivering primary care, the

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--> specialist, and what he refers to as the health care service. He notes with vivid examples the value that each brings to the management of chronic illness. All play crucial parts in dealing with chronic illness, and together will constitute the system of the future for delivering high quality care, no matter what version of "managed care" or other delivery system provides the organizing or financing infrastructure.

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--> Invited Address Halsted Holman If one looks at data from the early part of this century through the 1940s, the prevalence of acute disease, as measured at least by death rates, is declining. When the patterns from about the 1940s onward are viewed, death rates from chronic disease begin to rise. Chronic disease is now the largest cause of disability, visits to physicians, hospital utilization, and expense in the health care system. After the age of 45, arthritis is the leading cause of disability. Our health care system is thus confronted with a set of problems that is overwhelmingly characterized by chronic illness. My central argument today is that the health care system is attempting to deal with a set of problems for which it was not created. Our current system was created, in terms of its conceptual notions, its practices, and its institutions, to deal with acute disease. There is now a real discordance, because the system no longer is confronted primarily with the problems it was created to solve. That discordance is one of the major contributors to the health care crisis today. It follows, obviously, that solutions to the health problems that we are facing today will require us to accomplish a transformation from a system designed for acute care to one that is hospitable to, as well as efficient and effective in, the management of chronic disease. Before getting into the substance of my argument, a pair of definitions is in order. We are considering the disease problem—for purposes of this discussion, it is the biological entity—and the illness, which is the disease plus its consequences. These are not perfect definitions in dictionary terms, but they make a great deal of sense when thinking about what the health care system must address.

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--> To see the differences between what the system was constructed for and what it must deal with, we need to consider some of the differences between acute and chronic disease. Generally speaking, the onset of acute disease is abrupt, its duration is relatively limited, there is usually a single cause, and diagnosis and prognosis are accurate. It is usually self-limited, or a specific therapy is available. Technological intervention (laboratory tests, imaging, medications, surgery) usually is effective. The most important point is that cure is reasonably certain, or transition into chronic illness may occur. There is not a great deal of uncertainty involved, and although the patients are usually unfamiliar with the experience, the profession is quite knowledgeable. Consequently, we have a situation in which professional dominance is a characteristic of the way we treat acute disease. With chronic disease we are confronted with something quite different. Gradual onset is common; the problem unfolds over time. The consequences of the disease, which may be physical symptoms, emotional difficulties, social inadequacies, or economic handicap, can interact with one another, and sometimes even with the biology of the disease, to create a changing illness pattern and an undulating course over time. As we know in rheumatology, a substantial segment of patients cannot be classified. The diagnosis, although we think they have a rheumatic disease with reasonable certainty, is uncertain, and the prognosis is clearly obscure. Our technologies are not decisive. Our diagnostic modes have turned out not to give us very good information on which we can base our monitoring of the patients, much less our predictions of their outcomes. For example, joint fluid examination is useful basically only when there is an infection or a crystalinduced disease. Our serologic tests are not precise in distinguishing among rheumatic diseases. X-ray is notoriously useless in making an early and precise diagnosis, or in telling whether the symptoms themselves are a consequence of the abnormality you see. It has recently been shown, for example, that with low back pain and lumbar spine disease the correlation between symptoms and abnormality is poor, even for a sophisticated technology such as magnetic resonance imaging (MRI). We are not dealing with cures, but with management over a long period. That management is aimed, if not at cure, at maintaining the comfort and independent function of the patient. When that is the goal, clearly the consequences of the disease become targets of our attention just as much as the disease process. By consequence I am talking about discomfort, physical inabilities, emotional problems, social and economic deprivations, et cetera. Throughout the management of chronic disease, uncertainty is pervasive. The patient lives with the disease and basically becomes more knowledgeable about both the consequences of the disease and the consequences of our indecisive therapies. We have a situation in which we know about the biology and about the array of available therapies. It is the patients, however, who

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--> know about their effects. In a sense, both of us are partially knowledgeable and reciprocally knowledgeable, so an ideal system requires a partnership between the patient and the physician or among the patient, the family, and the array of health professionals who are playing a role in the care of the patient. These points can be illustrated in rheumatic disease by considering that we classify one chuster of rheumatic diseases with at least five names: rheumatoid arthritis (RA), systemic lupus erythematosus (SLE), vasculitis, progressive systemic sclerosis (PSS), and dermato/polymyositis (D/PM). In reality, when you watch patients over time, it turns out that the boundaries separating diagnoses are very vague and patients will pass from one category into another. A more appropriate representation would be depicted by a three-dimensional Venn diagram in which these diagnoses all overlap with one another and, in some patients, elements of all five can be found. An individual patient can start at any point in this Venn representation and, with differing speeds, wander through it, changing and the basic classification as the disease unfolds, either spontaneously without therapy or as a consequence of therapy. In the area of rheumatic diseases certain specific elements must be taken into account if the biology of the diseases is to be understood. The first of these elements is that, in any of these diseases, the target organ of the disease process may be different in people with the same diagnosis and can even change in a single patient over time. For example, a patient with SLE who presents in the classical pattern with rash, fever, pleurisy, and arthritis may go into either a spontaneous or, more likely, a therapeutic remission and reappear later with a seizure disorder, a nephropathy, thrombocytopenia, or many other versions of the disease. Over time, the target organs shift. Furthermore, the severity of the illness changes over time. Everybody knows that, but the ebb and flow of severity within the patient has never been understood in biological terms. We haven't a real clue as to why the disease begins or what modulates the ups and downs in its biological activity and, obviously, the illness that results. As mentioned earlier, there is a significant discordance between clinical and laboratory abnormalities. Thus, one begins to wonder how many of the laboratory abnormalities, at least the serologic ones, might represent a response or an adaptation to the disease, as opposed to a pathogenic abnormality that must be addressed. In this setting, you do not want to treat a patient who has an adaptive or a neutral abnormality. We had a very vivid example of that type of error at Stanford in earlier days. We thought that the appearance of antinuclear autoantibodies or their rise in titer was automatically a harbinger of a flare-up of the disease. As a result, when we noted such a rise, we began to treat the patients with corticosteroids. We found over time, much to our chagrin, that half of our patients' deaths were due to treatment. At that point. we were beginning to understand that the serologies were not reliable

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--> indicators of what was happening to patients. We backed off on the frequency, intensity, and duration of therapy, and our death rate plunged. Now we respond only rarely in any therapeutic way to a change in the serologies, even though we deeply believe that those serologies are telling us that there is an immunological origin to the illness and, conceivably, that the abnormal autoantibodies are, themselves, pathogenic agents. There is also substantial variation in therapeutic response. Some people who seem extremely ill will respond well to therapy, and others who seem minimally disadvantaged will not respond well at all. One could recite these same differences for rheumatoid arthritis. How can we make this practical in clinical terms? Assume for a moment that these conceptual notions are correct. I want to suggest you that there is a way that makes senseú It can be depicted very simply. Figure 4-1 presents a typical patient's symptom course, with time on the x-axis and severity on the vertical axisú Notice that points A, B, and C have the same severity, but each in a different setting. In one case the intensity of the disease is increasing, in another case it is declining, in another case it is on a plateauú A physician seeing the patient with this severity must make a judgementú What is the disease direction? What does it mean for therapy? The crucial ingredients for interpreting the patient's course involve two entities—the trend and the tempo of that trend. Figure 4-1 Idealized course of illness for a typical chronic disease. We need to know whether the information that the patient presents is representative of a deterioration in the patient's state, an improvement that

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--> could be spontaneous or therapeutic, or a plateau. How are we going to know what the trend and its tempo are? Clearly, the crucial tool we have is time, observation time. The judgement we must make is how much time we have. This is not so unusual. Acute disease physicians in an emergency room make their decisions changes in minutes and hours. However, we are now talking about using much larger blocks of time as the tool to establish the trends and tempos of chronic disease. In addition, what I said earlier about the characteristics of chronic disease is correct: we are going to have to involve the patient in that process. An ideal disease course curve is presented in Figure 4-1. A more realistic curve shows substantial oscillation around the true disease trend because of the changing symptoms and changing circumstances of the patient. Figure 4-2 illustrates how difficult this makes the problem. We have to be able to interpret whether any given observation represents a clear change in the true trend or a momentary aberration that a patient experiences as a result of the disease or of an emotional problem (e.g., something happening in the family, such as a child getting bad grades or an illness). The only way in which the distinction can be made between a change in the true trend pattern and this oscillation is through observation of the patient. The doctor and patient are engaged in a partnership to determine the reality of the events they observe. Figure 4-2 Realistic simulation of the course of a typical chronic disease. Another element in making the distinction between true trend and oscillation due to a nondisease factor is continuity of care. As all clinicians know, individual patients have their own patterns to an illness. When there is

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--> continuity of care over time, we begin to recognize these patterns. We learn to say to Mr. Smith that the change in pattern is the same as he experienced the last time he ran into difficulties at work or the last time he had an intercurrent infection. He will usually recognize that this is the case and useless escalation of therapies for the specific disease can be avoided. These observations are old hat to clinicians; the point is that they are most effective in a system where the patient and the doctor can work as partners. The rest of this paper has to do with the role of the patient, the role of the primary care doctor, the role of the specialist, and the role of the health organization or service in a system structured to manage chronic disease well. If we can define these roles, we can define the system that will be required, irrespective of whether it is a version of strict managed care or one of the variations that John Eisenberg identified for us. Tables 4-1 through 4-4 define the necessary roles of patients, physicians and the health service. The definitions are neither exhaustive nor precise, but serve to identify the activities and responsibilities that are essential for effective and efficient management of chronic disease. Patients become knowledgeable, active contributors and partners in decisions. Physicians become teachers, providers of professional information, and builders of a partnership relation. The health system creates the services and facilities necessary for sound patient and health professional functions. My view of the appropriate division of labor is contained in the four tables. Time will not allow explication of every line, so I will focus on a few issues and responsibilities. First, I want to stress the issue of self-management practices. The patient with chronic disease is clearly his or her most important health care provider (Table 4-1). The patient must manage the medications and engage in whatever behavior changes are needed, such as exercise for reconditioning and the use of cognitive strategies like relaxation and distraction to deal with pain. How well does self-management work? An example of ways in which it appears to work quite well in the rheumatic diseases has to do with our Arthritis Self-Management Program. This program consisted of six two-hour sessions, led by trained lay leaders, to educate patients on what we knew about chronic arthritis, what we knew and did not know about its therapy, what they could do for themselves, ways to use medical and community resources, how they could interpret their symptoms, and self-management practices such as relaxation, exercise, and compensation for handicaps.

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--> TABLE 4-1 Responsibilities of the Patient with Chronic Disease 1. Learn about: The disease and its treatment Self-management practices Prevention of disability Monitoring the course of the illness and its treatment in collaboration with the physician Ways to use the health system effectively 2. Take responsibility for: Participating in health risk appraisals Using appropriate prevention and self-management practices Participating with health professionals in joint decisions about health care by describing the personal meaning and impact of the disease, evaluating the disease/illness course, stating preferences for management directions, and choosing among treatment options 3. Evaluate the health care experience by: Expressing needs and desires for medical and health care Rating the character of care received Identifying the importance of changes resulting from health care and the satisfaction given by those changes Participating in outcome assessments, in the work of patient councils, and in other related activities aimed at improving health services. We measured the health outcomes over time, along with patient behaviors, and found that patients changed their behaviors as suggested in the learning experience.40 They also had reduced pain and depression, increased physical and social activity, and decreased use of medical services. Four years later, they still reported a 20 percent reduction in pain, an increase in their activities, and a 40 percent decline in visits to physicians, even though their mean disability score increased 9 percent. We were so surprised by this result that we got another group together and found very similar results: maintenance of pain reduction and physician visit reduction, despite the fact that disability continued to increase over those four years. 40   Lorig, KR, PD Mazonson, HR Holman (1993). Evidence suggesting that health education for self-management in patients with chronic arthritis has sustained health benefits while reducing health costs. Arthritis and Rheumatism, 36: 439–446.

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--> Alternative Delivery Mechanisms Alternative mechanisms for the delivery of care to people with rheumatic disease have the potential not only for influencing positively patient satisfaction and functional status, but also for effecting economic savings within the system. In one study, the use of rheumatology nurse practitioners resulted in positive health status changes that were not found in the rheumatologist-managed patient group.67 Telephone support provided by lay persons has been shown to improve functional status in people with osteoarthritis.68 Person-centered, nondirective, telephone-based counseling intervention significantly improved the psychological status of patients with lupus, in comparison to usual mechanisms of care. However, in the same study, similar improvements did not occur in patients with rheumatoid arthritis.69 Kaiser Permanente's Group Cooperative Health Care Clinic, Wheatridge, Colorado, in a pilot study now receiving ongoing funding by the Robert Wood Johnson Foundation, has noted positive patient and system responses to consultation sessions involving groups of geriatric patients. Such preliminary responses have included reduced hospital and emergency room visits, decreased mortality, and increased physician and patient satisfaction, as well as more timely and cost-effective use of preventive care (Scott et al., unpublished manuscript). Kaiser is considering expanding this successful alternative delivery mechanism to include certain disease-specific groups. I have been advised by a member of the Kaiser Study Group that rheumatology is viewed as the likely first area for such expansion. Further, multiple studies have demonstrated a linkage between the availability of social support and the patient's psychological well-being and decreased depressive symptoms.70 The psychological benefits of social support, which appear to hold up even when disease severity and physical 67   Hill, J, HA Bird, R Harmer, V Wright, C Lawton (1994). An evaluation of the effectiveness, safety and acceptability of a nurse practitioner in a rheumatology outpatient clinic. British Journal of Rheumatology, 33: 283–288. 68   Weinberger et al., op cit. 69   Maisiak, R. JS Austin, AG West, L Heck (1996). The effect of person-centered counseling on the psychological status of persons with systemic lupus erythematosus or rheumatoid arthritis. Arthritis Care and Research, 9: 60–66. 70   Affleck, G, H Tennen, C Pfeiffer and J Fifield (1988). Social support and psychological adjustment to rheumatoid arthritis. Arthritis Care and Research, 1: 71–77.

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--> dysfunction are controlled,71 must then be considered in the design of any ideal care system. Structured Care To ensure that the needs of populations of patients are addressed consistently and competently, a rheumatic disease care system must rely on structured care tools. Clinical care pathways, management guidelines for specific rheumatic diseases, and sophisticated algorithmic clinical decision-clarifying tools have all begun to pervade the marketplace. Today, professional organizations, newly incorporated clinical management subsidiaries of major pharmaceutical companies, and even voluntary health organizations are all bringing their particular experience and interest to bear on this area of disease management. Although the varied and often parochial agendas of these groups may present conflicting messages, managed care organizations are nonetheless moving rapidly toward adoption and implementation of structured mechanisms for delivering care that will best reflect the idiosyncrasies, corporate philosophies, and financial capabilities of the organization. What is clear is that the various forms of rheumatic disease, in particular lupus and rheumatoid arthritis, although fraught with uncertainty and demanding care that reflects not only a competent grasp of the prevailing "science" of medicine but an equally important appreciation for the illusive "art" of wise care, must and do lend themselves to standardized, considered, all-encompassing clinical treatment protocols. The depth of expertise resting within the established specialty community must be tapped in an effort to bring this essential balance of art and science—critical to the treatment of any chronic illness—into an ideal and workable disease management model for rheumatic disease. Relationship Between Financing and Care Essential to the success, first, of any single element of an ideal care system 71   Goodenow, C, ST Reisine and KE Grady (1990). Quality of social support and associated social and psychological functioning in women with rheumatoid arthritis. Health Psychology, 9: 266–284. Reisine, S (1993). Marital status and support in rheumatoid arthritis. Arthritis and Rheumatism, 36: 589–592.

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--> for people with rheumatic disease and second, of the overarching delivery system itself will be the long-term ability of the health care system to metamorphose in ways that support the interrelationship of financing and delivery of care around chronic healthcare needs. The evolved system will recognize that the needs of people with chronic disease must necessarily cross provider settings and extend over long periods of time.72 Care will emphasize disability prevention, delay, or minimization and will address patients' multidimensional needs. Financing a patients' long-term health care needs will be undertaken within a fixed-dollar capitation that is limited by the financial capabilities of the system itself, is increasingly scrutinized by the public, and is risk-adjusted for the presence of chronic disease. Further, the risk of providing care within these limitations, will be understood, accepted, and shared by all providers in a coordinated delivery system that allows for communication, innovation, and accountability.73 Measurement of Outcomes in an Ideal Care System Outcomes of an ideal care system for rheumatic disease must be measured broadly. Disease management systems will be judged by clinical, economic, and humanistic outcomes.74 Significant clinical events in a rheumatology model should include not only the traditional measurements of clinical trials (e.g., joint involvement and erosion, and physiologic and metabolic measures) but, more importantly, changes in health status outcomes. Economic outcomes must consider not only obvious short-term impacts on the system, such as patient visits and hospitalizations, but also long-term analyses of reduced disability and enhanced productivity. In turn, employers will express increasing interest in systems that address openly and effectively a decrease in work loss and restricted activity days. Humanistic outcomes will measure reduction in symptoms and enhanced quality of life, functional status, and patient satisfaction. Measurements of functional status for all outcomes must incorporate physical and psychosocial outcomes and must place values on slowing the rate of decline of functional levels, as opposed to maintaining a given functional status. Further, outcomes must incorporate new definitions of quality care. Pawlson, for example, says: 72   Bringewatt, R (1996). National Chronic Care Consortium Statement on Medicare Managed Care Programs. Testimony before the U.S. Congress, House of Representatives, Subcommittee on health of the Ways and Means Committee. Washington, D.C. 73   Alexander et al., op. cit.; Bringewatt, op. cit. 74   Epstein and Sherwood, op. cit.

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--> The patient's perceptions and his or her long-term outcome, in relationship to how well the interventions are applied, become central elements in [the] consideration of quality. Our ability to understand the interrelationship between patient satisfaction, patient compliance, and the amelioration or exacerbation of illness becomes an important focus of our efforts to measure quality.75 Indeed, new measures of quality of delivery will again reflect public input—from consumers, from employers, from government—and will evolve from consensus-building conferences such as that scheduled by the Health Care Quality Alliance (HCQA) for February, 1997. At this time, HCQA has committed itself to developing a white paper that can be presented to health plans, purchasers, accreditors, and other entities that will examine ''where measures are lacking, what consumers want, and how existing measures can be improved."76 These evolving perspectives on the success of a model care system will take place in the context of a framework of automated information, evidenced-based medicine and defined protocols of care, with explicit collection of outcomes information.... In the future, patient health will be improved by maximizing functionality; minimizing disease, disability, and death; and improving the efficiency and cost-effectiveness of health care. This improvement involves the use of effective outcomes tools, including linked databases and collaborative research efforts.77 Access to an Ideal Care System A care system—no matter how utopian in design—will never approach "ideal" if there remain those who are in need of its services but are barred from access. The casualties of today's system of managed care increasingly appear to be those who are disenfranchised due to preexisting conditions or economic misfortune. Perhaps, then, the ideal system can only be one that incorporates measures to address the cost of today's uncompensated care, which in the past essentially has been underwritten by academic medical centers or publicly supported hospitals and clinics. Additionally, federal and state legislation, such as the recently passed Kennedy-Kassebaum bill addressing portability and preexisting conditions, must continue to expand the 75   Pawlson, op. cit. 76   Health Care Quality Allaince (1996). The HCQA Quality Forum, 3. 77   Epstein, op. cit.

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--> rights of those with chronic rheumatic disease to obtain and maintain health coverage within any ''ideal" delivery system. Conclusion The resources inherent in today's emerging health care system offer great hope for the development and measurement of effective disease management systems. An ideal care system for rheumatic disease, the single most prevalent chronic condition in the United States today, should emerge within this framework and serve as a working template for numerous other chronic conditions. Systems will emerge that embrace clinical, economic, and humanistic outcomes. Systems will succeed if they are designed to retain the essential physician-patient partnership; to involve all caregivers, including the patient, in decisions geared toward successful long term outcomes; to distribute the shared financial risk and reward resulting from such treatment choices, and to recognize and address the multidimensional, longitudinal needs of, and preserve access by, the person whose life will be irreversibly molded by the presence of chronic disease.

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--> Discussion ALAN FOGELMAN: One term that has not been mentioned by anyone is the medical loss ratio. The fact that it has not been mentioned is almost like talking about heart disease or cancer without mentioning smoking. In terms of providing quality care, the medical loss ratio, from a practical standpoint, is one of the most important factors that we need to focus on and get the public to understand. The term implies that third-party payers feel that all premiums collected should be profit, and what is spent on care is loss from profit. Point-of-service plans in Southern California now have a medical loss ratio of 69.5. That means that 30.5 cents is taken out of every health care dollar for profit and administration, and only 69.5 cents goes toward medical services. I think Bill Kelley is right on target when he argues that in a steady state it will be impossible to provide high-quality care without a medical loss ratio that has a minimum of 85 cents on the dollar. Kaiser, which is a mature system, claims it has a medical loss ratio of 95 percent. I think it is probably closer, when you add in everything, to 90 percent. Still, that is very different from the national average of about 72 cents on the dollar. I think that no matter what we do, no matter how we try to design systems, until the public demands that a significant portion, at least 85 cents on the dollar, is spent for taking care of patients and organizing all the programs that we heard about that are needed today, we are not going to be able to provide quality care in a steady state for our population. JOHN EISENBERG: Alan, I am sympathetic to your concern, but I have to give the M.B.A. response to that, which is that the market will shake it all out. According to Adam Smith, if we are willing to pay a certain amount of

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--> premiums for our care and a plan is able to provide the quality of care we demand and make a profit, all the more power to it. A plan may transfer the profits from hospitals and doctors to investors, and the customer ends up the same basically. You cannot show me that the quality of care they are getting is worse than in the previous system. All you can tell me is that there are profits and that doctors aren't getting them. What will happen over time, Adam Smith would say, is that if the profit is so large, some other investor will say, "I can provide the same quality service for lower price," or "I can provide higher quality service for the same price," and that investor will attract all the patients to its plan. Adam Smith would say that, in the long term, whatever Bill Kelley's solution is won't be necessary because the market will shake it all out and the price and the cost of providing services will come together in an equilibrium state. Having said this, I am not at all sure that it is a perfect market, which is what is required. In an imperfect market, when there is a monopoly, there is a responsibility to have public regulation. This is the public utility model. Thus, the question that we ought to be addressing is not whether these profits are bad or not, but whether the market is going to solve the problem. Otherwise, we need a public utility model that says this is a monopoly and price regulation is required. BEVRA HAHN: We have to be careful in planning about one size fits all in terms of patient self-management. We don't want to come up with a strictly Caucasian paradigm. A lot of ethnic groups that we deal with in Los Angeles are not interested in self-management and are much more interested in being directed. You achieve a better outcome, in my opinion, if you go with what a particular group wants. HALSTED HOLMAN: Kate Lorig, my colleague and a designer of the Arthritis Self-Management Course, is just completing a Spanish arthritis self-management course, which has been successful. We don't have all the outcome results, but we know already that the people who volunteered for it were very, very pleased. There was some question about whether it would fit well, based on certain cultural differences. I think the jury is still out on how we approach other cultures and other ethnic groups. We will have to be sensitive and explore ways to do this. TERESA BRADY: I agree that different cultures have different beliefs about self-management, but I don't believe a chronic disease can be managed without self-management. On fact, chronic disease is always self-managed by what the patient chooses to do or not do. We must find ways of engaging these populations so that they choose appropriate self-care behaviors. A physician

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--> cannot direct care 24 hours per day, 365 days per year, so patients need to assume some of that responsibility. LAURA ROBBINS: In regard to culture and access, I think the work that has been done with lupus patients in the parallel self-management programs has opened up a Pandora's box in terms of access and utilization of services. We really must look at access to services, putting aside the socioeconomic barriers of course, and ask what we need to know to have patients come into our HMOs and managed care, whatever it may be. JOHN ROWE: I am particularly attracted to the concepts and the comments about the patient being the provider and the need for a partnership that is a collaboration. I wondered whether the panelists have had any experience with the completion of that thought. That is, do the patients get report cards? Do we feed back to the patient-provider the data on how the patient's functional status is changing and what the utilization of health care resources is? Does the patient as well as the provider get the practice care guideline, and is that guideline developed by both the patient and the provider? I wonder how serious we are about the fact that the patient is the provider? TERESA BRADY: I don't know of anybody who has done it. Certainly in our system we have talked about it, but this would be a nightmare to administer. Just as insurance rates vary depending on whether you smoke or not, perhaps there could be different rates for health insurance based on your self-management behavior? HALSTED HOLMAN: As far as I know, there are no studies on that subject, but I would certainly say that the patient gets a report card every day. This report card is his or her own experience with disease consequences. In a good doctor-patient relationship, to my way of thinking, what you talk about is whether there are possibilities of improvement and what those entail. The diabetes control study showed that if patients do certain things rigorously, they will get several measurable advantages. However, patients often say, "I don't want to do those things. They are too much of a bother to my life." My own experience is that each patient presents different considerations. Patients' report cards from their own disease differ, and I try to respond to that. JOHN ROWE: I am quite serious about my question. I was envisioning instances in which the patient might, on seeing the data, say, "You know, I am not calling enough. Look at that." Or the patient may say, "You know, maybe you are right. I am calling you too much. It seems normal to me that I should call every morning, but I see now that is not the case. I also see that the relationship between these calls and how I am doing is actually not so

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--> good." Perhaps he or she would say, "Now I see, as I look at this over time, that my disease really does fluctuate sort of independently of these other things." I am quite serious about providing feedback. The data are available. There is no extra cost to collect them. It is just a matter of sharing them with the patient. HALSTED HOLMAN: One of the necessities is a readily available medical record. When that is available, the patient can carry it so that when you converse, you are conversing from the same database. NORMAN LEVINSKY: I have a comment about the role of specialists and primary care physicians, but I will take one second, as Chief of Medicine at Boston City Hospital, to reinforce and emphasize the comments of a couple of speakers on the questionable utility of what I think is a middle-class model of patient involvement for some of the populations with which we deal. It is not just African American versus white. At Boston City Hospital, we need no less than 14 different translators to deal with our patient population. In terms of telephone contact, not all of our patients have telephones. Thus, I really wonder about the generalizability of the model to the underserved. In particular, who is going to pay for the additional cost of serving such patients? My comment concerns the specialist as primary care physician. It is true that in chronic diseases, specialists may assume responsibility as overall care giver, but that doesn't make them primary care physicians. I am thinking about some experience and information, albeit anecdotal, that we obtained in an Institute of Medicine study on nephrologists involved in the management of patients with chronic end stage renal disease, particularly patients on dialysis. Because of the technology, those patients almost always become the property, so to speak, of the nephrologist. This doesn't mean that even though they are board certified in internal medicine, nephrologists remember to do mammograms and Pap smears, and so forth. In fact, our anecdotal information is to the contrary. ELIZABETH BADLEY: I'm from Toronto, Canada and also, as you can tell from my accent, from the United Kingdom. One of the most striking differences in moving from Canada or Britain or Australia, or for that matter, the rest of the English-speaking Western world to America is how little rehabilitation professionals are involved in rheumatology here. I know that within the American College of Rheumatology rehabilitation professionals are alive and well, and multipurpose arthritis centers do have rehabilitation professionals involved. However, the striking thing is that if you go to a rehabilitation meeting in America, a physical therapy meeting, an occupational therapy meeting, rheumatology just isn't on the program. In fact, when my colleagues organized a special session at the American Congress of Physical

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--> Therapy that involved the care of an arthritis patient and the scenario was circulated to the organizing committee in America, the response was, "Oh, we don't deal with that kind of patient." This is one of the challenges for rheumatologists—to include the other health professionals through their professional organizations and through their normal practice, as opposed to the special practice in rheumatology centers, in the care of patients with arthritis. STEPHEN KATZ: I know that the focus here is on the management and care of individual patients, but it seems to me that part of good management and care is also the development of new knowledge. I would like to ask how you think that the changing health care system will be involved in the generation of new knowledge in terms of diagnosis, treatment, prevention, rehabilitation? SARALYNN ALLAIRE: That is one of the concerns that I was trying to express: if care systems require that people with rheumatic diseases be cared for by primary care physicians, each physician will see a few people with RA, an occasional person with lupus, and so on. This will really hinder the learning that can occur about diseases. This is not only true with physicians; it is also true of allied health professionals and the rest of the team. I think there is a continuing need for specialty medical centers that focus on a particular disease, so that people gain experience with it. JOHN EISENBERG: I would divide research into three different kinds. I am not terribly optimistic that those who are looking for big loss ratios, as Alan would put it, will want to sink their money into research whose payoff is as far away and as publicly available as fundamental research, so I think this is going to have to remain a public responsibility. I suspect that if you get to the level of clinical research, there is good news and bad news. Managed care systems have an opportunity, because of the databases, their defined populations, and their organized systems of care, to do better clinical research than we have ever been able to do before. However, most of the companies who are trying to look out for their bottom line, nonprofit institutions as well as for-profit companies, don't feel they have enough money to spend on this kind of clinical research unless it is of immediate value to the organization. Therefore, there is a disconnect between the capacity to do good clinical research in these integrated system and the willingness or resources to support it. I think the unfunded clinical research that has existed in hospitals, for better or worse, will be gone soon. Our ability to do clinical research with surplus clinical dollars is diminishing rapidly. The situation in health services research is much like it is in clinical research. The capacity to do good health services research in integrated

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--> systems of care is truly remarkable: the databases, the organized systems, and so on. Again, however, their willingness to do research that is in the public domain and research in which the agenda is set by what is in the public interest rather than solely in the interest of a specific organization is often questionable. JEREMIAH BARONDESS: John Eisenberg said that HMO is a grab bag term that is no longer useful. I would submit that the same is true of primary care physician, a nonhomogeneous term that embraces sophisticated generalists as well as people in various specialties and subspecialties and at various levels of training and expertise. It is not merely not useful but is counter-productive to refer to all of them with a single label.