National Academies Press: OpenBook

Changing Health Care Systems and Rheumatic Disease (1996)

Chapter: 4: What Would Ideal Care Look Like?

« Previous: 3: Keynote Address
Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
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4
What Would Ideal Care Look Like?

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×
This page in the original is blank.
Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

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

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

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.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

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.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

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

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

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

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

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

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

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

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

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.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

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.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

I do not want to go into the details here, but when we asked ourselves whether practicing what we taught was responsible for the beneficial outcomes, the answer was essentially no. The correlations between practice of what we taught and health outcomes were never better than 0.20. After focus groups with participants, we took the results to psychologists and hit upon the notion that their perceived self-efficacy to deal with the consequences of arthritis might be playing a role. We constructed instruments to measure self-efficacy and found correlations in the range of 0.6 to 0.7 between patients' self-efficacy at baseline, before the program began, or their growth in perceived self-efficacy over the four years following the program, on one hand, and decline in pain or in the use of physician services on the other. Thus, in this aspect of self-management, one can see fairly significant improvement in patients that appears to arise from attitudinal change and is additive to medicinal therapy.

There are other aspects of self-management that are very important. A crucial one is that the patients take certain responsibilities, but they would be unwilling to do so unless they were satisfied with their experience, feeling that it was benefiting them. We now have good evidence that the way in which physicians behave determines the degree of patient satisfaction. In the setting of chronic disease, the physician becomes a person who is an educator, who encourages, and who provides continuous partnership-type care. It is known that the more participatory the attitude and behavior of the physician toward the patient during encounters, the greater are the patient satisfaction, the patient's compliance, and the willingness of the patient to remain in the care of that physician. Physician support is important for effective self-management by patients.

As Tables 4-2 and 4-3 illustrate, the responsibilities of primary care physicians and specialists in managing patients with chronic disease are complementary but often quite different from the roles they play in the case of acute disease.

In the presence of chronic disease, the role of the specialist changes. The specialist usually does not provide continuous care. Therefore, the specialist is not the right principal physician for the individual with chronic disease, particularly an older individual; the average person over age 65 has more than 1.5 identifiable chronic diseases and many have three or four. So, the role of the specialist is one of advising the patient and the primary care physician. How well is that done today?

In multispecialty groups it is sometimes done very well, but in many settings no appropriate role integration exists between specialists and primary care physicians, with the specialist advising, doing certain things, occasionally taking full responsibility, and then passing that responsibility back to the primary care physician. We are not trained or structured for that kind of role.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

TABLE 4-2 Responsibilities of Primary Care Physicians in Managing Patients with Chronic Disease

1. Provide and/or coordinate comprehensive, continuous medical and health care as needed.

2. Learn the consequences and meanings of disease and illness to the patient.

3. Assess the trends and tempos of the disease clinically through collaboration with the patient and family.

4. Involve specialists as partners in initial evaluations and outcome monitoring over time while remaining the principal physician in most cases.

5. Educate patients concerning both the disease and its treatment and the value of and ways to develop a partnership method of managing the disease/illness.

6. Conduct joint decision processes with the patients, in which the physician explains disease consequences, prognosis, and treatment options while the patient assumes responsibility for assessing disease and treatment effects and choosing among treatment options.

7. Locate health care in the most appropriate site—be it office, home, hospital—employing the most efficient methods to determine disease tempos and trends, such as proactive and reactive telephone contact, remote monitoring, mobile services, and visits to any site of care.

8. Elicit assessments from patients and families concerning the quality of their health care, its efficiency, and their satisfaction with it.

Table 4-3 also makes two points that I think are very critical in this setting. One is how we use diagnostic technologies, and the other is how we use treatments. Ideally, in acute disease, diagnostic tests identify a specific cause, and treatments cure. With chronic disease, such opportunities are rare; instead, diagnostics usually reveal only cross-sectional information on a lengthy trend while indecisive therapies have both beneficial and adverse effects. Trends can often be identified by other, simpler observations such as monitoring symptoms or physical state. Potential adverse effects may make a therapy undesirable to a patient. Therefore, diagnostic tests should be used only when an action will predictably be determined by the outcome. A treatment should be used only when the patient and the principal physician agree.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

TABLE 4-3 Responsibilities of Specialists in Management of Patients with Chronic Disease

1. Participate in a team with the primary care physician and the patient to design and conduct the most effective, efficient, and satisfying diagnostic and management plan.

2. Employ diagnostic technologies only when they predictably provide a specific answer that leads to an action.

3. Through a ''firm arrangement,'' participate, wherever appropriate to the disease or the problem, at all levels and sites of care. In particular, use rapid contact, remote monitoring, mobile services, and visits to the community or the home to ensure appropriate involvement in health care.

4. Initiate treatment only when the expected outcomes are understood and agreed upon by the patient and the primary care physician.

5. Accept primary responsibility for care whenever appropriate for the disease or the problem, keeping the primary care physician involved and returning responsibility to the primary care physician when reasonable.

6. Function as a primary care physician when accepting primary responsibility beyond the specific disease or problem (i.e., when accepting the role of physician of first contact).

Table 4-4 addresses the responsibilities of the health care organization or service in managing patients with chronic diseases. I am going to elaborate on only one point. This has to do with the way the system establishes communication between the patient and the physician. I don't know how many of you are familiar with John Wasson's study41 on the use of the telephone, but it is a beautiful study done in the White River Junction Veterans Medical Center at Dartmouth. Elderly patients with chronic disease were randomly assigned to one of two groups. Patients in one group received their usual return appointment on their initial clinic visit. Patients in the second group also received the return appointment, but before the return visit, they were called by a health professional who asked how they were and responded to questions about their medical situation. Then, if the patient was doing well, the visit was cancelled.

41  

Wasson, J, C Gaudette, F Whaley, A Sauvigne, P Baribeau, H Welch (1991). Telephone care as a substitute for routine clinic follow-up. Journal of the American Medical Association, 267: 1788–1829.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

TABLE 4-4 Responsibility of the Health Care Service in Managing Patients with Chronic Disease

1. Readily accessible ambulatory health care, both primary and specialty, preferably in the community.

2. Health care in all other appropriate sites such as the emergency room, hospital, or the home, including hospice care, and diverse institutions for recovery or long-term care, including respite care.

3. Technologies that facilitate or enhance noninstitutional care such as rapid telephone contact, remote monitoring, mobile services (e.g., food, laboratory and x-ray, homemaker), and visits by health professionals.

4. Subscriber and patient education programs concerned with health risk assessment, disease and disability prevention, disease characteristics and therapies, and self-management practices.

5. Electronic information systems for the medical record, communication among health professionals, and remote monitoring of patients.

6. Facilities for rapid and efficient cooperation between primary care physicians and specialists (e.g., information systems, telephone, joint conferences).

7. Expeditious hospital care, including ambulatory preoperative evaluations and integration of discharge planning with home care services.

8. Evaluations of quality of service and health outcomes conducted with both health professionals and patients.

9. Subscriber and patient voice in service management.

10. Organized, integrated health care "firms" across the full spectrum of medical need extending from ambulatory care through quaternary care, and continuous working relationships between designated specialists and groups of primary care physicians.

Wasson and his colleagues studied the effect of this system over two years. The result was that the number of visits to physicians was reduced by 30 percent for members of the telephone group. Surprisingly, their health status at the end of the two years was better than those who made all their appointments without the telephone calls. Also, their hospitalization rates were considerably lower, and the savings in costs were quite substantial. Telephone care can be a central component of managing chronic disease.

In summary, by recognizing the differences between acute and chronic

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

disease, a number of requirements essential for effectiveness and efficiency in health care become evident. The first is development of appropriate clinical practices. The second is achieving the necessary roles for patients, families, physicians, and other health professionals. The third is creating health services that are consonant with the new responsibilities. By meeting these requirements, we will come much closer to an ideal system.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

Invited Reaction

Saralynn Allaire

I want to comment on three components of what I see as an ideal care system for persons with rheumatoid arthritis (RA) or lupus erythematosus (SLE). To begin, I will follow up Dr. Holman's comments on partnership between the patient and the physician, because I think this is extremely important. At least in some cases, this partnership can go one step further, so that the patient actually becomes the director of care, particularly in terms of making care decisions. This making of care decisions helps in coping with the long-term effects of chronic disease, because it facilitates a sense of control. Individuals with RA or SLE often cannot control the progression of their disease. For them a sense of control needs to come about through the ability to control decisions made about their care and their lives.

Now the question is whether different care systems affect whether or not a patient can make decisions about care. I'm not sure if they do or not. Perhaps, as Dr. Holman has suggested, it is the knowledge and attitudes of providers that are most important. However, it seems to me that fee-for-service and point-of-service care systems offer more choices and interfere little with the patient-physician relationship. Thus, they promote patient decision making more than systems that emphasize cost reduction, thereby restricting the types of care covered as well as the choices. In systems with capitation, physicians become partners with the insurer in making care decisions, and the patient is left out. Because of this and the relative lack of regulation in the health insurance business, I believe there is a need for consumer-controlled organizations to which patients can turn for advocacy and also for provision of some types of services, horne care services in particular. Independent living centers are examples of such organizations. People with

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

rheumatic diseases have never made much use of these centers or been involved in the independent living movement, but there is a need for greater involvement on their part. To summarize my comments about this component, the ideal care system facilitates care decision making by patients.

The second component I wish to address is the role of specialty versus primary care providers in caring for patients with RA or SLE, and my overall comment is that such a system recognizes that one size does not fit all. For patients like me for whom RA is the only, or major, health problem, it is more efficient for the rheumatologist to be the lead provider. I did belong at one time to a health maintenance organization in which primary care physicians were the lead providers, with the rheumatologist playing a consultant role. In this situation I found that getting the rheumatic disease care I needed was invariably a two-step process. The primary care providers simply couldn't answer the questions I had or handle my rheumatic disease problems. So, either they or I then always had to call the rheumatologist. In addition, because primary care was what they knew and wanted to do, and perhaps because I saw them more often than patients without ongoing health problems, I ended up getting a lot of primary care I didn't want or need.

I would like to say also that I believe there will be a continuing need for specialty care centers, because some providers—physicians and allied health professionals as well—need to have the experience of seeing many patients with one type of disorder. This is beneficial in helping them learn about the disorder and its treatment. These providers are the ones who will be able to develop improvements in clinical care. To summarize the second component, the ideal care system supports ongoing access to specialized care, especially for the treatment of less common disorders.

The last component I will address is support for exercise programs. I asked several friends who have RA what they wanted from their health care system that they didn't have now, and they all said access to and funding of exercise programs. The programs desired are not the traditional range-of-motion exercises. Some of you are probably aware that research is showing that aerobic exercise and programs that build lean body mass are particularly beneficial for persons with RA. Insurers have been loathe to fund ongoing physical therapy exercise programs. Such programs follow a rehabilitation or recovery model, which doesn't really fit aerobic and lean body mass building programs. The latter types of programs are more preventive in nature and thus follow more of a health and fitness model.

Some insurers, interestingly enough, are funding fitness programs, albeit to a small degree. In the Boston area, for example, some try to attract new members by offering discounts on initiation fees to health and fitness centers. Some of these centers employ physical therapists, so perhaps patients with RA or SLE ought to try to get their exercise needs met through health and fitness centers rather than through traditional rehabilitation centers. The question is

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

whether there will be any interest or willingness on the part of insurers to fund involvement in exercise programs at fitness centers on an ongoing basis. It would be interesting to see if models with different levels of copayment, based in part perhaps on income, could be tested for cost-effectiveness. Another benefit of offering "rehabilitation" services through health and fitness centers is that the centers are a more normal setting and so might enhance compliance. The ideal care system would financially support the ongoing exercise and fitness needs of patients with RA or SLE.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×
This page in the original is blank.
Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

Invited Reaction

Teresa Brady

I am speaking from two different perspectives. One is that, like Saralynn, I have rheumatoid arthritis. The second is that I work in a care system in the Minneapolis area that is in the process of transforming itself from a hospital holding company into an integrated health network.

As many of you know, Minneapolis is one of the more advanced managed care environments, deeply into fourth-generation managed care. The care principles that the Fairview Health System developed have become the drivers of our care model. Hal talked about several concepts in our model, so I am going to emphasize just a few of them. I have three main points: the importance of self-management, the need for changing roles, and the possibility of alternative delivery mechanisms.

Hal Holman did a very nice job of laying out the case for self-management as a crucial element of the ideal care system. We need to come to terms with the concept that in actuality the patient is the provider. As health care professionals, we have traditionally thought of ourselves as the providers, but in chronic disease we are not. Hal highlighted that it is the patients who have the opportunity (and responsibility) to take the medicines or not, to do the exercises or not, and to pace themselves or not. Thus, regardless of our recommendations, it is the patient who provides his or her own care on a day-to-day basis. Our opportunity to provide care is limited by the small amount of time we are in contact with the patient. We need to change the way we engage patients in that self-management opportunity, and the way we train professionals to help patients self-manage.

I was struck by the fact that John Eisenberg did not refer to self-management at all when he outlined the training changes he believes are

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

needed for the future. Clearly, if patients with chronic disease are to successfully manage their disease, we need to teach them to become active partners rather than passive recipients of care. In the Chronic Disease Management Project at Fairview we have seen that many of our patients mirror their physicians' attitudes toward self-management. Participatory physicians have many patients who are active self-managers; more directive physicians have more passive patients who do minimal self-care activities and are less likely to comply with treatment recommendations. We do not know whether the self-management attitude is contagious (i.e., patients adopt the same attitude as their physicians), whether patients seek out physicians who match their own attitudes toward self management, or whether physicians alter their attitudes based on what they think patients want. However, if patients match their physicians' attitudes, we need to train professionals to engage patients in the self-management process.

One of my favorite arthritis self-managers, who has a superb relationship with her physician, recently engaged in a debate with that rheumatologist. Speaking of their partnership, they debated who had the majority share, or 51 percent, of the control and who had 49 percent. The fact that they could even have this debate showed how remarkable their partnership is. As she talked more about it—and they did differ on who held the 51 percent share—she realized that in reality she held 90 percent. Although her rheumatologist thought he held 51 percent, he really only had 10 percent.

I maintain that rather than being providers, in chronic disease the professionals are really coaches. We can motivate, we can encourage, we can run skill development drills, but the person doing the day-to-day management of the disease is the person who gets out of bed each day with arthritis. We clearly need to set up our systems so that appropriate self-management is inherent in them.

Facilitating self-management is one of the role changes necessary in the ideal care system. Other role changes are necessary, and prepaid health plans may help facilitate these changes. Rather than asking whether the specialist or primary care physician should be the lead provider, I think the question is more elemental than that. We need to step back and ask who sees the patient, when and where, and for what purpose.

We need to expand our roles to look at the patient more longitudinally over time, to be aware of the trend and tempo of the disease as Hal discussed, and also to look more multidimensionally at the patient to address not only the biological disease but the entire illness experience Hal described. John Eisenberg talked about some of the blurring of professional responsibilities. Certainly there are models in which care is delegated to other providers such as nurse practitioners and physician assistants. I maintain that some of the time the appropriate provider is not a substitute physician, but another type of provider such as a rehabilitation therapist or social worker. The Fairview Care

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

is the delivery and/or arrangement of a broad range of care management services in a manner that is accessible, comprehensive, and coordinated over time. That function may sometimes be delivered by a rheumatologist, a primary care provider, or another type of professional.

As we change some of our roles, we also need to change our delivery mechanisms. I think prepaid medicine gives us the opportunity to explore alternative delivery mechanisms. Health care delivery is currently based on what is reimbursable. Telephone calls are not reimbursable, direct admissions to nursing homes are not reimbursable, some exercise programs or self-management classes are not reimbursable. Perhaps we would be wiser to throw away the concept of what is reimbursable and organize our care around what is going to provide the best benefit for this patient over the course of the disease. Hal mentioned telephone interventions. A study by Weinberger et al42 found that they increased functional status with monthly telephone support. I think the support came from a lay person, not even a health professional. Who would have thought that was possible?

Like Saralynn, I have 22 years' experience living with rheumatoid arthritis. For 15 of those years I have been on methotrexate, with the exception of a one-year drug holiday after pneumonitis. Throughout most of my disease course I have made bimonthly visits to my rheumatologist. I have had several episodes of frequent medication manipulation in response to disease activity, and I have also had numerous periods of a stable treatment regimen. Presently I see my rheumatologist every two months. He does a joint exam, and we laugh together about whether or not I should get more rest. Of course, he can't rest for me; I have to figure out how to do that for myself. In the last two to three years of bimonthly visits, we made one modest increase of my sulfasalazine. I like seeing my rheumatologist, but as I was preparing for this meeting I began to question these routine bimonthly visits. Is this a good use of the health care dollar when my treatment program is stable?

I know I need a rheumatologist. I have aggressive disease and a complex situation. I need someone skilled at monitoring and adjusting these medications. I need regular monitoring of side effects, but do I need bimonthly rheumatologist visits? Could some of this monitoring be done by phone, by another professional, by self-assessment?

Perhaps we could pay for some of these alternative delivery mechanisms in place of existing (and currently reimbursable) care patterns. Kaiser of Colorado is experimenting with group visits to a physician. Similar chronic disease or elderly patients come in together for an extended session with their physician and another professional. Individual needs are taken care of during

42  

Weinberger, M, SL Hines, WM Tierney, (1986). Improving functional status in arthritis: The effects of social support. Social Science and Medicine, 9: 899–904.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

the breaks. Brief individual sessions are held following the group meeting if necessary, but they are rarely necessary. This seems to be a clinically and financially effective alternative delivery mode.

In summary, my key points, which reflect some of the National Chronic Care Consortium's criteria for chronic care networks, are that self-management is essential and we need to organize our care system around it, that we need to integrate changing roles by all of our care providers into our care management, and that we need to explore alternative care delivery mechanisms. Finally, pooled or shared risk financing may provide the financial incentives to incorporate these necessary changes in the ideal care system.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

Invited Reaction

Debra R. Lappin

Like Saralynn Allaire and Teresa Brady, I have had a rheumatic disease for nearly two decades. I have been asked to look at the question of ideal treatment from this perspective. I would like to examine the three critical components of an ideal care system, as defined by Hal Holman: the patient, the physician, and essential elements of the system itself. To these I would add two further components: (1) how outcomes of an ideal system will be measured, and (2) who must be assured access in order for the system to be viewed as ideal. I hope my remarks regarding these components, while redundant at times, will shed additional light on today's discussion.43

The Patient

First, the way the patient is perceived within the system of care may drive many aspects of the model. As an example, Teresa Brady's organization, the Fairview Health System, recognizes in its internal training materials that a person is a ''patient'' at the point in time when he or she interacts with the delivery system. However, the label is not meant to suggest "subservience or lack of autonomy—concepts that have been prevalent in present or past uses of the word patient.... [P]atients should be raised up, elevating them beyond

43  

The author wishes to express her appreciation for the assistance of T.J. Brady, Ph.D., and L. Callahan, Ph.D., in preparing these comments.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

member, customer or client."44

Patient self-management has been viewed as central to the design of any care system for any chronic disease,45 A fortiori, this concept should serve as the keystone for a system designed to address rheumatic disease. As Holman has stated, "The patient, in the presence of chronic disease, is clearly the single most important care provider." Indeed, David Sobel, Regional Director, Patient Education and Health Promotion, Kaiser Permanente of Northern California, describes the patient as the "true primary care provider."46 According to Brady, other members of the health care team serve as "coaches.'' As she has written, "In day to day life with a rheumatic or connective tissue disease, health professionals can only teach, motivate, and run skill development drills; the patient him or herself is the one that needs to actually run the plays or provide the care."47 If this active, managerial role of the patient is widely embraced by evolving systems of care, it necessarily follows that professional training must be reoriented to prepare the physician for this very different role of, and relationship with, the patient.48

The importance of self-efficacy and self-management not only is something to which those of us with rheumatic disease can bear anecdotal witness; it is also supported by widely recognized clinical studies conducted at Stanford. Hal Holman, in his important work with Kate Lorig, has demonstrated that health education for self-management in patients with chronic arthritis, over a four-year period following intervention, can lead to a 20 percent reduction in pain and a 40 percent decrease in physician visits, even though physical disability may have increased as much as 9 percent.49 Leigh Callahan has shown in her studies that socioeconomic status and a sense of learned

44  

Alexander, GI, T Brady, M Brunnette, T Burmaster, B Dickie, A Ellison, R Gibson, J Lally, L McNamara, R Meiches, B Milavitz, D Walsh, (1995). The Fairview Care Model: A Work in Progress. Minneapolis: Fairview Health System.

45  

Zitter, M. (1995). Disease management: A new approach to health care. Medical Interface, 7: 71–76. Zablocki, E (1995). Using disease state management to coordinate care across the continuum. The Quality Letter, November, 2–10.

46  

Sobel, D. (1996). Clients/patients as partners in prevention and care management. Presented at the National Chronic Care Consortium Workshop, San Francisco, May 5–8.

47  

Brady, TJ (in press). Managed care in the care of rheumatic disease patients: Opportunity or oppression? In J Melvin and G Jensen, (Eds.), Assessment and Management of Arthritis in Rehabilitation.

48  

Pincus, T (1993). Arthritis and rheumatic diseases: What doctors can learn from their patients. Pp 177–192 in D Goleman and J Gurin (Eds.), Mind/Body Medicine. Yonkers, NY: Consumer Reports Books. Pawlson, LG (1994). Chronic illness: Implications of a new paradigm for health care. Journal of Quality, Improvement, 20: 33–39.

49  

Lorig, KR, PD Masonson, HR Holman (1993). Evidence suggesting that health education for self-management in patients with chronic arthritis has sustained health benefits while reducing health care costs. Arthritis and Rheumatism 36: 439–446.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

helplessness are associated with increased mortality rates in rheumatoid arthritis,50 In other studies, a higher sense of self-efficacy has been associated with greater psychological well-being, and psychoeducational interventions have demonstrated significant reduction in pain, depression, and disability over and above the effects produced by medications.51

The Role of The Physician and the Relationship Between the Primary Care Provider and the Specialist

An ideal care model must address the optimum terms for a "handoff" between the primary care provider (PCP) and the specialist, in most instances the rheumatologist, but also in others—to name only a few—the orthopedist, gastroenterologist, nephrologist, podiatrist, pulmonologist, or ophthalmologist.

With reference to this hand-off, John Eisenberg, who spoke earlier, stated that "primary care doctors navigate, negotiate, evaluate, educate patients and make decisions, and consultants consult." This perspective raises an obvious question not only for the system of care, but more particularly for the consumer with complex rheumatic disease who, like those of us commenting today, has come to place a high value on his or her ability to maintain a direct and continuing interchange with a specialist in rheumatology.

Simply posed, the question is, What should the role of the rheumatologist be in any ideal care system? Should the rheumatologist serve as the primary care physician; as the principal physician, who sees the patient regularly, while other less frequent primary care needs are handled by a primary care physician; or as the consultant? One study mentioned by Eisenberg confirmed that much of what a rheumatologist does, at least in 1979, is to see patients regularly for their arthritis. Indeed, 59 percent of rheumatologists surveyed at that time were acting as the "principal physician" for their rheumatic disease

50  

Callahan, LF, DS Cordray, G Wells, T Pincus (1996). Helplessness as a mediator of the association between formal education and mortality in patients with rheumatoid arthritis. Arthritis Care and Research, 9: 463–472.

51  

Taal, E, JJ Rasker, O Wiegman (1996). Patient education and self-management in rheumatic diseases: A self-efficacy approach. Arthritis Care and Research, 9: 229–238. Buckelew, SP, B Hywser, J Hewett, JC Parker, JC Johnson, R Conway and DR Kay (1996). Self-efficacy predicting outcomes among fibromyaligia subjects. Arthritis Care and Research, 9: 97–104. Mullen, PD, EA Laville, AK Biddle and K Lorig (1987). Efficacy of psychoeducational interventions on pain, depression and disability in people with arthritis: A meta-analysis. Journal of Rheumatology, 14 (Suppl. 15): 33–39.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

patients, whereas "consults" were only 17 percent of their activities.52

The targeted use of a rheumatology consult within a model care system may contribute to direct economic savings. Preliminary findings summarized in an abstract and presented at the 1995 Scientific Meeting of the American College of Rheumatology (ACR) indicated that in a Medicare risk plan that required a rheumatology consult before other orthopedic, radiology, or therapy referrals could be made, orthopedic procedures dropped from 14.9 to 6.7 joint replacements per 1000 enrollees; payments to orthopedists dropped over $3.30 per member per month; and there was an accompanying reduction in hospital costs, which were five times those of the physicians' costs.53 Specialist referral may also have the potential to confer other benefits on both the system and the patient. Again, in preliminary findings, rheumatologists treating complicated rheumatoid arthritis patients were shown to have achieved better outcomes with fewer physician visits than primary care physicians with similar patients.54 Still another paper presented at the 1995 Scientific Meeting of the ACR suggested that patients sent for rheumatologic care had lower average annual costs, although comparison and control data are unclear.55

The future role of and need for rheumatologists remain the subject of differing opinion. On one hand, active intervention by a rheumatologist in the care of the patient with rheumatic disease is believed to benefit both the system and the patient.56 My own case stands as a stunning example of successful intervention more than a decade ago with early and aggressive immunosuppressive therapies—therapies that, at the time, would have been used and managed only by a specialist. However, others opine that rheumatologists tend to maintain a "serious disease" orientation often characteristic of a consultant that may lead them to undertake substantial

52  

Aiken, LH, CE Lewis, HJ Craig, RC Mendenhall, RJ Blenden, DE Rogers (1979). The contributions of specialists to the delivery of primary care. New England Journal of Medicine, 300: 1363–1370.

53  

Overman, S, L Rayburn, D Kent, D Uslan, (1995). Rheumatologists and musculoskeletal managers in a Medicare risk program (Abstract). American College of Rheumatology 59th Annual Scientific Meeting, San Francisco, October 21–26.

54  

Yelin, E, C Such, L Criswell, W Epstein (1995). Outcomes for persons with RA treated by rheumatologists and non-rheumatologists (Abstract). American College of Rheumatology, 59th Annual Scientific Meeting, San Francisco, October 21–26.

55  

Singh, G, D Ramey, J McGuire (1995). Costs of medical care for patients with rheumatoid arthritis: An 11-year study (Abstract). American College of Rheumatology, 59th Annual Scientific Meeting, San Francisco, October 21–26.

56  

Epstein, S, LM Sherwood (1996). From outcomes research to disease management: A guide for the perplexed. Annals of Internal Medicine, 124: 832–837.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
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testing to rule out unusual diagnoses,57 or may cause them to overlook the patient's nonrheumatological health care needs.

In an era when the measurement of quality of delivery of care by health systems will include increasing emphasis on outcomes—among them, patient satisfaction—it is my opinion that timely and appropriate specialist referral will be shown to correlate directly with greater patient satisfaction. In turn, preliminary data summarized above may suggest an accompanying savings to the system. Obviously, more studies in this area are required, and, indeed, this need may be met by managed care organizations as they invest in the study of specialist referrals, as a function both of their bottom line and of consumers' perceptions of quality care.

To summarize, an ideal care system must address these tensions in the relationship between the PCP and the specialist and must consider the most effective use of the specialist, here the rheumatologist, in treating systemic rheumatic disease. This can be as a consultant, early on for selected musculoskeletal cases, or in one of three roles later on in the face of diagnostic uncertainty, uncontrolled symptoms, or complications from the disease or medications.58 In these latter instances, the choice must then be made whether the rheumatologist will best serve the patient and the system by continuing in the role of a consultant or by assuming an expanded role, as the principal physician for the patient or as a designated primary care provider who maintains a special expertise in rheumatology,59 These choices, about which consumers are certain to express their opinions, will impact how specialists are trained in the future and, as Eisenberg and others have noted, will drive work force demands in the specialty in the years ahead.60

Other Elements in An Ideal System of Care

Elements of an ideal care system thus include, first, the changing role of the patient: this encompasses engaging the patient in his or her own self-management and rethinking the physician-patient relationship in order to vest in the patient a sense of control, self-efficacy, and ability to manage the daily physical, psychological, and social impacts of chronic illness. Second, the system must address the role of the specialist in the management of this

57  

Meenan, RF (1996). Managed care and the rheumatologist. Current Opinion in Rheumatology, 8: 91–95.

58  

Dorr, R (1996). Guidelines to Rheumatology Referral. Atlanta: American College of Rheumatology.

59  

Pawlson, op. cit.; Meenan, op. cit.

60  

Epstein, Sherwood, op. cit.; Meenan, op. cit.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
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population of patients. Finally, the system itself must recognize and integrate into treatment protocols numerous other methods of care that are critical to successful management of the rheumatic disease patient. Each of these is discussed here briefly.

Rehabilitation

As Saralynn Allaire emphasized in her comments, rehabilitation in rheumatic disease has been underappreciated, underutilized, and thus underfinanced, and must be a considered a critical component of an ideal system of care.61 According to our keynote speaker, John Eisenberg, primary care doctors are experts at rehabilitating patients, something that is underemphasized in most of our rheumatology training programs. Whether the failure of the current system, in this regard, is rooted in the limitations and biases of specialty training programs or in the narrow focus of rehabilitation that characterizes much of medical training, most care systems today continue to view (and thus reimburse) rehabilitation as a finite event. However—and I agree with our other responders again here—the patient with acute or advanced rheumatic disease cannot function successfully without timely, and often periodically repeated, specialized rehabilitation through physical, occupational, and psychological modes of therapy.

Exercise

An ideal care system for rheumatic disease must consider the impact of exercise on patient outcomes and support patient involvement in a serious exercise program, not as part of a rehabilitation program but as part of a long-term personal commitment to health maintenance. As Allaire has noted, emphasis should be placed on "normalizing" and "mainstreaming" the patient's routine and experience.

Exercise programs for people with rheumatic disease that emphasize not only range of motion, but endurance, aerobic fitness, and strength conditioning have been shown in various contexts to produce improvements in physical and psychological function, cardiovascular health, and fitness without aggravation of disease activity and symptoms.62 Resistance training has been considered

61  

Sobel, op. cit.; Epstein, Sherwood, op. cit.

62  

Minor, MA (1991). Physical activity and management of arthritis. Annuals of Behavioral Medicine, 13: 117–124. Stenstrom, CH (1994). Therapeutic exercise in rheumatoid arthritis. Arthritis Care Research, 7: 190–197. Semble, EL, RF Loeser, CM Wise (1990). Therapeutic exercise for rheumatoid arthritis and osteoarthritis. Arthritis and Rheumatism, 20: 32–40.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
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a possible means of counteracting metabolic and body composition changes that accompany advanced rheumatic disease.63 Inclusion and reimbursement of exercise modalities within a system of care, however, represent a likely departure from today's delivery mechanisms. Certainly the experience of those of us responding, which has been confirmed by at least one study relating to osteoarthritis patients, has been that the majority of patients with rheumatic disease are not consistently advised by their physician to engage in modest range-of-motion exercises or, if so advised, are not then given specific exercise instructions.64

Nonrestrictive Drug Formularies

An ideal care system must consider the value of widely varying and rapidly advancing pharmacological approaches to the treatment of rheumatoid arthritis and lupus. The value of any single pharmacological intervention varies from patient to patient and fluctuates over time with each individual. Suitability of a particular intervention or of a delicate combination of drug therapies changes in response to the ebb and flow of the disease, to the patient's tolerance of the treatment, and to the continued efficacy of a particular prescribed course. Restrictive drug formularies, while especially problematical in the treatment of rheumatic disease,65 have been shown in other contexts to result in increased physician visits, mental health visits, and nursing home admissions.66

63  

Rall, L, C Roubenoff (1996). Body composition, metabolism and resistance exercise in patients with rheumatoid arthritis. Arthritis Care and Research, 9: 151–158.

64  

Dexter, P (1992). Joint exercises in elderly persons with symptomatic OA of the hip and knee. Arthritis Care and Research, 5: 36–41.

65  

Pincus, T, LF Callahan (1989). Clinical use of multiple nonsteroidal anti-inflammatory drug preparations within individual rheumatology private practices. Journal of Rheumatology, 16: 1253–1258.

66  

Zitter, op. cit. Soumerai, S, D Ross-Degnan, J Avorn, TJ McLaughlin, I Choodnovskiy (1991). Effects of Medicaid drug-payment limits on admission to hospitals and nursing homes. New England Journal of Medicine, 325: 1072–1077. Moore, WJ, RJ Newman (1992). U.S. Medicaid drug formulaties: Do they work? PharmacoEconomics, 1 (Suppl. 1): 28–31.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
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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.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
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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.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
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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.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

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.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

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.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

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

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

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

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

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

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

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

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

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

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
×

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.

Suggested Citation:"4: What Would Ideal Care Look Like?." Institute of Medicine. 1996. Changing Health Care Systems and Rheumatic Disease. Washington, DC: The National Academies Press. doi: 10.17226/5472.
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Market forces are driving a radical restructuring of health care delivery in the United States. At the same time, more and more people are living comparatively long lives with a variety of severe chronic health conditions. Many such people are concerned about the trend toward the creation of managed care systems because their need for frequent, often complex, medical services conflicts with managed care's desires to contain costs. The fear is that people with serious chronic disorders will be excluded from or underserved by the integrated health care delivery networks now emerging. Responding to a request from the National Institute of Arthritis and Musculoskeletal and Skin Diseases, this book reflects the results of a workshop that focused on the following questions:

  • Does the model of managed care or an integrated delivery system influence the types of interventions provided to patients with chronic conditions and the clinical and health status outcomes resulting from those interventions?
  • If so, are these effects quantitatively and clinically significant, as compared to the effects that other variables (e.g., income, education, ethnicity) have on patient outcomes?
  • If the type of health care delivery system appears to be related to patient care and outcomes, can specific organizational, financial, or other variables be identified that account for the relationships?
  • If not, what type of research should be pursued to provide the information needed about the relationship between types of health care systems and the processes and outcomes of care provided to people with serious chronic conditions?
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