Peter Wehrwein
MANAGED CARE August 1997. ©1997 Stezzi Communications

Not too long ago, disease management was viewed with widespread suspicion. But the evidence mounts that well-designed programs make medical sense and can help patients as well as the bottom line.

Peter Wehrwein

Let's say you're a managed care executive trying to sell physicians on the idea that disease management is a good thing, for both them and their patients. Well, meet Terry Bennett, M.D., M.P.H., a 59-year-old Rochester, N.H., solo general practitioner and self-described "dinosaur." He could be your toughest customer. Maybe even your nightmare customer.

Disdain comes close to describing Bennett's view of you and most managed care organizations. As far as he's concerned, most HMOs approach doctors with one goal in mind, which is "to maximize their profits." He has, to be sure, many managed care enrollees in his 10,000-patient practice, but he says, "We batter the HMOs, so they leave us in peace." And his opinion of disease management? "It implies, by and large, a plan done for financial reasons that does not make any sense."

But get Bennett talking about 100-bed Frisbie Memorial Hospital, which is also in Rochester, and he will tell you how the quality assurance committee discovered that most of the hospital's congestive heart failure patients were not getting their weight checked regularly. Of course, gaining weight is a telltale sign that a congestive heart failure patient is retaining fluids and thus may need his or her medication adjusted. So Frisbie established a simple, straightforward protocol for regular bedside weight checks of congestive heart failure patients, according to Bennett. Sounds like something out of a disease management program, doesn't it?

Or get him talking about Tufts Health Plan, a not-for-profit HMO in Waltham, Mass. Tufts, he says, deserves an "A+" for the way it has approached Frisbie, cultivating good will with a small contract that paid for a review of hospital practices, identifying outliers and the like. But, you ask, isn't that disease management? No, says Bennett. "That is patient management."

Just a euphemism?

Bennett himself may be something of an outlier on the spectrum of physician opinion, but his views nonetheless signal some of the problems that proponents of disease management face. For people suspicious of managed care (especially in its for-profit manifestation), disease management is just a gussied-up term for denying services and limiting access to doctors. Say "disease management" and their heads dance with visions of drive-through mastectomies and gag rules.

A 1991 study for Pfizer Inc. by the Boston Consulting Group, a management consulting firm, is often credited with creating disease management. Therefore, for people suspicious of pharmaceutical industry intentions, disease management is little more than a way for drug makers to repackage educational materials and proactive prescription utilization programs.

Even where there isn't suspicion, there is often confusion about exactly what disease management means. The goal of disease management is clear enough (and just about impossible to quarrel with) — namely, to coordinate and manage the care of patients throughout the course of their disease. But as is so often the case, the devil of high-minded aspirations is in the details of their execution.

For Allan Khoury, M.D., the Cleveland-based associate medical director for medical informatics at Kaiser Permanente of Ohio, a computerized set of practice guidelines and reminders for physicians is the sine qua non of the whole field. "I think the most important component of disease management is guideline compliance," says Khoury.

"The guidelines may be the beginning," concedes Andrew E. Barrer, Ph.D., president of Physician Disease Management in Washington, D.C., "but how do you get to the end, where guidelines are being followed?" Barrer, whose company does outcomes research and provides case management services to physician groups, payers and pharmaceutical companies, emphasizes the importance of measuring outcomes and sees a key place for case management. Barbara Turner, M.D., a primary care physician and health outcomes researcher at Thomas Jefferson University in Philadelphia, sees disease management as a way for specialty physicians to "carve out" the care of patients by disease specialty, which in her opinion risks leaving primary care physicians out of the picture.

Disease management "is something that has been evolving, and what you think it is just depends on your slant on it. A rose is a rose is a rose, but none of them smell alike," says Thomas James III, M.D., medical director for Alternative Health Delivery System in Louisville, Ky.

Yet despite the suspicions, and perhaps because the eye of the beholder largely determines exactly what it entails, disease management is fast becoming as much a part of American health care as managed care itself. In a survey of 85 large employers and 15 disease management program vendors commissioned last year by the Disease Management Society, 94 percent predicted greater utilization of and influence for disease management programs. On a disease-by-disease basis, 80 percent said they had, or were planning to start, programs for diabetes and asthma; 60 percent were at one of those stages for breast cancer and 50 percent for depression. Sixty percent said they had operational programs for women with high-risk pregnancies. Still, for many of these organizations, disease management is still very much unexplored territory. Most of the existing programs have been in place two years or less.

The survey also found that most disease management is home-grown: 80 percent of the current programs at managed care organizations were developed in-house. But the organizations also reported expectations of greater reliance on outside vendors in the future.

Physician groups, hospitals positioned as "centers of excellence" in a disease area and companies devoted to disease management are all jockeying for position — and dollars — in the growing disease management market. More than 1,700 people attended the first meeting of The Disease Management Congress last year in Washington, D.C., and "exhibition floor space sold out three months before we thought it would," says Laurie Jackman DiModica, membership director of the society. These days, for every skeptical Terry Bennett, there is at least one Andrew Barrer arguing that disease management is the wave of the future in American health care.

Boomers: older, sicker, costlier

"Disease management is not depersonalizing at all," says Barrer. "To the contrary, disease management is a way to personalize health care more than ever. The old system was looking at disease only. It was event-centered. Now we look at care management as being patient-centered."

Though the initial impetus for disease management came from pharmaceutical companies worried about selling to managed care organizations, larger forces are at play that explain disease management's surging popularity. Demographics is one. The U.S. population is getting more and more top-heavy with the elderly, and although some recent research demonstrated gains in "compressing the morbidity" of the elderly, the basic equation holds: More old people = more chronic disease = more health care expense.

A widely cited paper in the Nov. 13, 1996, edition of the Journal of the American Medical Association on the cost and prevalence of chronic diseases reported that in 1987, when roughly one of every eight Americans was over 65, more than 45 percent of noninstitutionalized people of all ages had one or more chronic diseases and that their direct health care costs accounted for three-quarters of the country's direct health care expenditures, or $272 billion. By 2030, the JAMA paper said, when the baby boom is in its golden (a.k.a. sicker) years, one of every five Americans will be 65 or older, 148 million will have a chronic disease and their health care bill will reach $798 billion. No one is going to alter the demographic tide, so clearly the best ways to derail the projections are to keep fewer people from getting chronic diseases and to make treatment of chronic disease less expensive. Disease management partisans say that is what it's all about.

At a more philosophical level, some argue that organizing health care delivery and financing along disease management lines is simply the best fit for most of what modern medicine does, which is not so much to rid a person of a disease as to favorably alter its course and stave off death. Insulin is frequently cited as an example. It does not cure diabetes but treats one of its manifestations — namely, hyperglycemia.

Chemotherapy for cancer and bypass surgery for coronary artery disease can be viewed in the same way. This line of thinking says that it is 20th-century medicine's success, in a sense, that has added the "chronic" to "disease." Disease management is just the health care system's way of catching up.

Clamor for information

But there are much more immediate reasons that disease management is now being pushed into the spotlight. Managed care organizations have become especially interested in it as they scramble for ways to cut costs and increase profits or revenues. Certainly the bloom is off the rose of wellness programs: Too often the financial payback on a wellness program is uncertain.

Increasingly, says DiModica, managed care organizations are living by the so-called 80-20 rule: 80 percent of health-care costs tend to come from 20 percent of patients, so that 20 percent is where the attention should focus.

She notes that when there is too much variation in how people with a particular disease are treated, then developing a rational, coordinated system can help an organization bring the costly extremes back into line and perhaps alter the 80-20 rule to its advantage. Asthma is a good example. It has been a favorite target of disease managers partly because it is one of the most com- mon chronic diseases in the working-age population generally covered by HMOs (the same is true of diabetes). But also, historically, there have been wide variations in the hospitalization and emergency room utilization rates of asthma patients. Obviously, if a managed care organization can define a standard of care for asthma patients that keeps those folks out of the hospital and away from the emergency room, it is money ahead.

The booming market for Medicare HMOs is another reason managed care organizations are jumping on the disease management bandwagon. Given the expected flood into Medicare risk plans in the coming years, it is not the least bit surprising that 70 percent of the managed care organizations surveyed by the Disease Management Society reported that they have, or are planning to have, a congestive heart failure management program. Congestive heart failure is common — in fact, it is the most common cause of hospitalization for Americans 65 or over — and expensive — it costs Medicare over $5 billion a year. Moreover, there is still a lot of judgment involved in treatment of CHF, as doctors must chose from an array of drugs.

James, at Alternative Health in Louisville, says don't underestimate the influence of the National Committee for Quality Assurance on the behavior of managed care organizations. And though NCQA doesn't explicitly require disease management for certification, it does want managed care organizations to have some proof that they are working to improve the health of their population. "That," he says, "just about cries out, 'Show me your disease management program.'"

In Barrer's opinion, NCQA requirements for patient satisfaction and outcomes measurement have also whetted the appetite for disease management. "The risk takers have to be concerned not only about costs, but also about quality," he says. "In the 'old' days of managed care, it was purely cost reduction."

Disease management is also becoming more accepted by physicians because they are the ones doing it. And they are doing it because an increasing number of them are assuming, happily or not, some of the the insurance risk of covering patients. Capitation gives the physician much the same incentive to reduce costs, often by keeping patients out of the hospital, as the managed care organization receiving the fixed monthly premium.

"I have been to conferences where the presenters say that the physicians are clamoring for information about practice guidelines and disease management programs because they believe that it can help them better manage patients and finances," says Di- Modica. But some physicians (or the companies that employ or contract with them) are actually seeking out risk in the form of so-called "carve-outs" whereby both the care and the risk for a certain category of patients are assumed.

There is a lot of news in disease management circles these days about carve-outs for AIDS patients, for example. Though Barrer is the first to admit that the "science of costing out AIDS care is not very good," he says that if physicians were to seek an AIDS carve-out contract with, for example, Oxford Health Plan, they would use disease management to give them a sense of where they stand (how many patients, how sick they are, projections about their care and its cost) and how to operate (case management, patient education programs, outcomes data).

Information explosion

Finally, disease management has come into its own for the same trite, but true, reason any enterprise dependent on information has grown: the computer network. Khoury says the whole system of practice guidelines and rapid reminders to physicians about adhering to those guidelines "would be very difficult to do without computers." And of course, outcomes measurement, which Barrer and many others say is key to a successful disease management program, would be impossible without all the data collecting and processing powers of contemporary computer systems.

Proof in the pudding

There is still a lot of wiggle room left in the definition of disease management, and a whole lot of active debate and discussion about how disease management ought be measured. The result is that it is hard to get anyone to say flat out, "Yes, disease management works." DiModica's tentativeness about a broad-brush statement is fairly typical. "The results for disease management are there, but the successes are anecdotal," she says. The anecdotes are nonetheless beginning to pile up, and one apparent reason disease management is taking off is that it does seem to be working fairly well.

In many cases, the imprimatur of academic research and government reports has been one key to disease management efforts. It both gives managed care organizations some outside information to go on and immediately wins the program some credibility with physicians and patients. So, for example, Khoury cited a study published in the New England Journal of Medicine on Sept. 14, 1994, to make a disease management case for annual flu shots for the elderly. Undertaken at the Veterans Administration hospital in Minneapolis, the study found that annual flu immunization not only cut the rate of hospitalization for pneumonia, influenza and congestive heart failure, but also resulted in a cumulative saving of $5 million.

Many of the guidelines Khoury uses at Kaiser Permanente were developed from the federal government's Healthy People 2000 recommendations for health promotion and disease prevention. "These are not radical things we are doing," he says.

James says the 1991 National Institutes of Health consensus panel on asthma treatment, which was revised this spring, was the wellspring for the asthma disease management program at Alternative Health, and the same can be said of asthma management programs throughout the country. Similarly, the NIH-sponsored Diabetes Control and Complications Trial has been hugely influential both in making a strong case for comprehensive diabetes management (the study has shown a 50- to 75-percent net reduction in retinopathy, nephropathy and neuropathy and a $4 billion cost saving) and in showing what diabetes management should involve (frequent glucose monitoring and flexible adjustment of insulin dose).

Theory and practice

But the direction that a well-designed study can provide is one thing. Actually getting there is another. Proponents of disease management say their programs are producing real-world results. Cardiologist Randall Williams at Evanston Hospital in Evanston, Ill., launched a program for congestive heart failure patients in October 1995. It zeroes in on quickly identifying appropriate patients, educating them and tracking their compliance with medications. Williams's program keeps a close tab on ambulatory patients; he has them calling in every day with their symptoms and their weight.

A high proportion of patients on ACE inhibitors is widely considered one sign of a good congestive heart failure program; Williams says 90 percent of the patients in his program are on these drugs. He also says the proportion of patients who have had an ejection fraction measured in the last six months is "way up."

Williams says successful disease management depends on tight reins — "You don't solve the problem unless you control, manage and integrate all the clinical resources across the full continuum of care" — and physician involvement.

"If you don't have the doctors directly involved, you aren't going to get very far."

Cutting hospital days

As with most other conditions, the component of congestive heart failure treatment that accelerates cost most dramatically is hospitalization. Williams says his program has cut the length of stay for Evanston Hospital congestive heart failure patients from an average of 6.2 days to 4 and, even more impressively, cut the 30-day readmission rate from 19 percent to 2.6 percent.

Evanston Hospital bought his program for less than $250,000, he says, and recouped its investment in less than six months (because congestive heart failure patients are covered by Medicare and most cardiologists are still paid on a fee-for-service basis, the financial risk for congestive heart failure patients tends to fall on the hospital, explains Williams, though that could change with the advent of Medicare HMOs).

At Alternative Health, James says that since a "baby watch" program for risky pregnancies was started four years ago, the rate of low-birth- weight babies (2,500 grams or less) has dropped from 2.5 percent to 0.5 percent. The core of the program is a nurse contacting pregnant women over the phone. James is candid. He says he cannot prove that the baby watch program had anything to do with the lower number of low-birthweight babies. Also, the actual number of babies involved is quite small; the 2-percentage-point decrease reflects roughly 45 fewer low-birthweight babies per year. But it is still improvement, especially given the serious, lifetime consequences of low birth weight.

James also says the more recently developed asthma management program has also produced good results. A before-and-after comparison of 211 patients in the active disease management program showed, over six months, a drop in emergency room admissions from 75 to 34 and a drop in inpatient admissions from 31 to 6.

Both Williams and James stress how important it is to get physicians behind a disease management program. "If doctors don't feel that one alternative is better than another, you can have the best guidelines around, but they are just not going to use them," says Williams.

As someone brought into a cardiology group a couple of years ago specifically to set up a disease management program, Williams hasn't had to proselytize his colleagues. James, however, working for a managed care organization, goes to innumerable committee meetings ("I've had more than my fair share of doughnuts," he says). "Physicians have to have a sense of ownership and buy-in" if a disease management program is to work. Otherwise, he adds, they will resent the effort as a managed care plan's obnoxious attempt to dictate their practice of medicine.

The patient factor

Patients also have to be sold on disease management if it is to work, James says. "Patients wonder, 'What in the world does the insurance company want to know all of this information for? All I want is for them to pay the bills,'" he says. Sensitive to the suspicions of patients, James says Alternative Health's asthma program uses a soft touch to encourage patients to participate. For example, he says, a nurse might visit a hospitalized asthmatic and say something like, "This is terrible, this asthma landing you in the hospital, and we have a program that could help you."

Where primary care fits in

All the indications are that disease management, in all of its various forms and manifestations, will continue to weave itself into the fabric of American medicine. Skeptics like Terry Bennett, who don't like or trust managed care organizations, will be hard to win over. If the programs improve patient health (or "make sense" in Bennett's terms) and prove they can do more than doctors' hands and save insurers money, maybe even the skeptics can be won over.

But there is also worry on the part of some primary care physicians, such as Barbara Turner, that disease management could become overly dominated by specialty groups. Taken too far, carved up by different specialists, disease management eventually could cause the kind of uncoordinated care problems it was designed to solve, she says.

"Many people have multiple diseases. Under fee-for-service medicine, they would almost literally wander from doctor to doctor," Turner says. "There was no coordination. I think for patients with complicated diseases, having a physician to coordinate care, to be the central repository of information, can make an enormous difference. If I send a patient with a pulmonary problem to a specialist, I may be the only person who knows that the prescribed medication is not good for that person's valvular disease."

Peter Wehrwein is a Boston-based health and science journalist and a senior writer at the Harvard School of Public Health.

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