1997 Partnerships for Networked Consumer Health Information Conference

Transcripts of Plenary Sessions and Breakout Sessions

Breakout Session: "Redefining Roles: Embracing the Patient as Partner"

Tuesday, April 15
3:45-5:15 PM

Moderator: Carolyn M. Clancy, M.D., Director, Center for Outcomes and Effectiveness, Agency for Health Care Policy and Research, U.S. Department of Health and Human Services, Washington, DC

Richard Rockefeller, M.D., President, Health Commons Institute, Falmouth, ME

Edward Bergmark, Ph.D., President, Optum Division, United Health Care Corporation, Minneapolis, MN

Dorothy Wetzel, Director, Customer Advocacy, Pfizer, Inc., U.S. Pharmaceuticals Group, New York, NY

David Feffer, Health Care Consultant, Chester, CT

Clancy: Welcome to the best session of the day, which I'm confident in saying based on the quality of our panel. There has been a lot of research on the issue of patients as partners, but what's new is the considerable health information available on the Internet and through multimedia. We have an emerging question: Is there a role for physicians? I'm confident that we will find one.

The first speaker is Edward Bergmark. He'll start with how we got into this mess.

Bergmark: Unlike Molly, whose hero is Yoga Berra, mine is Lily Tomlin. She once said, "I always knew I was going to be somebody. But now I wish I had been more specific."

What we're going to do is go back a few years, back to when the average life span was 35 years, which gave people the opportunity to go through their teenage years and midlife at the same time. Back then, the standard treatment was bloodletting. During the yellow fever epidemic, Benjamin Rush, physician signator to the Declaration of Independence, bled 100 to 125 people per day. Also common at the time was purging, a treatment that had the benefit of visible results. Hanging was popular for some diseases, a case of atrogenic disease taken to the extreme.

Other treatments, such as sweat boxes and mercury ointments, could be tortures as well to the patient.

Prior to anesthesia, medicine was often a horror show. Patients died of shock during surgery. A doctor's greatest assets were strength and speed. According to the Guinness Book of World Records, one physician was clocked at doing a leg amputation below the hip at 33 seconds -- even if he did once accidentally remove the fingers of three assistants during one surgery.

During dental procedures, patients either lost a few teeth or all of them at once. If they lived through that, they were not on the way to recovery. They faced months of agony and infection by peritonitis. Doctors were helpless in the face of infection or fever. "Childbirth fever" was fatal for centuries, with a higher rate of death for deliveries in a hospital than at home. There is little wonder at this statistic, as a report from a particular French hospital recounts six patients in one bed, body pressed against body, suffering from various conditions, such as postpregnancy, infantile disease, typhus, and severe skin rash.

If you didn't take care of yourself and keep yourself out of the hospital back then, the price was indeed high.

This started to change with a series of discoveries in the 1800’s. One discovery was ether, an anesthetic that was quickly adopted worldwide for use in operations. Chloroform found favor after it was used on one particular patient, Queen Victoria. Then Ignatz Semmelveiss reduced the postpartum death rate at his hospital from 18 percent to 1.2 percent by a remarkable innovation: washing hands between patients. Prior to the 1800’s, there were no facilities for washing hands before a procedure. Doctors would routinely go straight to an obstetrics patient from the necropsy room.

Pasteur persuaded the world to view medicine through a scientific lens, and the door to discovery was opened wide. Dr. Joseph Lister, immortalized in the name Listerine, treated a compound fracture with carbolic acid and had it heal with no infection, which was unheard of at the time. By the 1860’s, hospitals had become houses of healing instead of horror shows.

In 1880, immunization was discovered, and many diseases that had once been fatal were no longer a threat. And an accident produced the discovery of X-rays, a wonderful diagnostic tool, by 1896. This provided a helpful diagnosis for tuberculosis, before acute symptoms began, and prompted widespread screening of the population.

In 1941, a constable dying of septicemia had his fever go down when he was injected with a new mold, proven effective in humans, known as penicillin.

Over the next decade, 15 antibiotics rendered a century's illnesses moot. Disease no longer invariably killed you -- you just had a doctor take care of it. Tuberculosis is a microcosm of how we take medicine for granted. Under its earlier name, consumption spawned an industry of health spas where sufferers could rest in the outdoors. Victims were romanticized as heroes. Then the cure came in 1949, and by the 1950’s what was known then as the white plague had receded from national consciousness. After Salk found the vaccine for polio in 1955, this disease, too, vanished.

The cumulative result is that the age of 50 was a life span in the midcentury -- and is now a time of midlife crisis.

This is why we have a culture of medicine as cure-all, and not prevention as the cure. Once, with modern medications, we were invincible, but now we are felled by our own actions. As Eubie Blake said, "If I had known I was going to live this long, I would have taken better care of myself when I was younger."

Which leads me to addressing the common attitude of "Why should we switch to healthy actions when medicine can fix us?" These attitudes account for the 140 percent increase in heart bypass surgery. No wonder McDonald's sells so many hamburgers. The other old excuse was that heart disease and cancer kills old people, who are supposed to die anyway. Not until AIDS, which kills the young, did we start to watch our own behavior. While medicine can do much for us, we need to be more informed, and know how we as individuals can impact our health.

One in three people look beyond medicine to healing arts like meditation and therapy. Information alone will not change health-adverse behavior. Becoming knowledgeable is the first step. We must look at more effective ways to change and help people monitor their behavior.

We are trying to address the needs of the whole person -- the tremendous impacts of all day-to-day issues. How do we create a breadth of services and make information available in a useable manner? We see our task as being the creation of multiple integrated platforms where people can get information on issues affecting them.

Rockefeller: That was a terrific history. I'll talk about the new potentials in partnerships between doctors and patients. I'll also include a flag-waving polemic on managed care, then the nature of knowledge in caring for patients.

A role of managed care has been to try and change medicine by reducing dependence on overutilized resources. But it is not the American way to change by cutting resources. This is why we are uncomfortable. Instead of making such cuts, we should discover and use underutilized resources, such as biomedical knowledge and the patients themselves.

We need new attitudes toward biomedical knowledge. The scope is far more vast than can be comprehended, and we need to comprehend better.

We have been imagining that we can crank new information into doctors so they can solve problems with their patients. We like to think that the information we obtain enriches biomedical knowledge on the whole. The problem is that health care professionals’ knowledge drops along the way – whether just after medical school, or in communication to the patient.

Around 1915, physicians used their brains for many things. It was not impossible to think that one person could corral all biomedical knowledge, analyze problems, and diagnose. The problem is since then we've seen the explosion of biomedical knowledge, and no one knows how vast this pool of information is. If you read two medical journals a night all year, you'll end the year needing 800 more years to catch up on everything that was published since. Gradually, biomedical knowledge squeezes the other things out of our brains.

Clearly, that causes friction between the doctor and patient. Ideally, we need help, such as from a computer that delivers knowledge to doctors and patients so they can make decisions together.

The challenge is not to provide complete information. We can do that now through many techniques. It is far more important to get it to the patient at the right time. The task of delivery and processing is difficult and time consuming, but not as difficult as the task of updating millions of physicians' brains and keeping them up to date through continuing medical education. If we took a fraction of available resources and put them into tools, the problem would be resolved by now.

It's hard pushing in new knowledge and pushing out old knowledge.

Once we have information to doctors in real time, it's a small step to get it to patients when they can use it -- and once patients have this information, they will begin to drive the system. I used to have to explain the benefits of getting information to patients. An explanation does not seem as necessary anymore, but I’ll mention a few benefits just the same.

First is that possession of this knowledge enables us to control our own bodies. Second, the patient becomes co-producer of care, facilitating more efficiency. To describe the potential of this tool with regard to education, you can't get a good education without doing a lot of work on your own. In software, the designers depend highly on the users. This is also true in public safety. We have introduced the idea of co-production in health care -- that's work done by the patients.

A more radical view, which I espouse, is that of informed decision making using computer technology and involving the patient in all aspects of care, including diagnosis. I have had a number of experiences where the patient came up with a diagnosis that I missed. These experiences relate to how different patterns of symptoms and disease are recognized and how doctors use information. Doctors learn to interpret information in the background and absorb it quickly. Patients do not have that ability. But if you tailor the information to the specifics of this individual’s situation, he or she knows the specifics better than anyone. The patient can take a printout home and spend time learning it. And when they go on the Internet and talk about it, they can come up to speed and become more knowledgeable than I am as a general practitioner. Consequently, the patient becomes an enormously productive partner.

Patients seem to be far smarter than they were previously. I had a patient with a bad headache, who answered all questions in monosyllables. He was thought to be slow and depressed -- but when he went through a 100-question questionnaire on our diagnostic software, the program picked up a dual diagnosis of sleep apnea and subdural hematoma from an old injury. He then snapped up and said, "This is the most specialized diagnosis I've ever had. This program has an IQ of 150." This from a man who had only spoken in monosyllables before.

The question came up about new roles for physicians. When you bring computers into the picture, you have the potential to solve problems. But a problem is that we bring more uncertainty with complete knowledge, and there is no doubt that someone with experience in recognizing problem patterns is of high value.

In the coming era, doctors will not be ancillary. There is something archetypal in the doctor-patient relationship. If you take away the doctor's role as an important partner and healer, the patients lose valued expertise. But if the era of parentalism is over, we must replace it with collegiality and get rid of authoritarianism (but not the authority of the doctor).

There is a recognized paradox between humanism and quality care. You can go to all kinds of practices and get humanism and concern. But right now, you can get good care or human care, though it’s rare to get both. It's thought that rehumanization will not come about through technology, that computers are dehumanizing. But I think the reverse is true. By assigning work to computers we can focus on the best of the doctor-patient relationship.

Wetzel: Before I can talk about "Patients to Partners, A Technology-Driven Relationship," I have to say that everything's changed.

I'll give a quick overview of pharmaceutical companies of yesteryear, the new changes, and the new role of pharmaceutical companies.

Go back in time to when the physician was totally in charge, about 25 years ago. They had unchallenged control over diagnosis and treatment, and the media portrayals like Marcus Welby were accurate. People were uncritically and totally dependent on doctors.

Pharmaceutical companies were just marketing medicines to a small and homogeneous population. Companies did not have a reputation with patients.

Then everything changed. In the 70’s, there was an acceleration on the supply side of medicine, which has not stopped, although consumer demand has kept pace. Costs started to rise as economic speed bumps hit. In the 90’s, managed care took off, going from 2 million enrolled consumers to 50 million in 1995.

In the 70’s, the three networks were the vehicles of information delivery. In 1980, narrowcasting became available through new technologies. Then in the 90’s there was an explosion of segmentation. A lot of people are looking for different things, and the media are more targeted. According to the Morse Principle, computer power doubles every 18 months, and the cost of having this technology is halved. That's why we can do all this.

Back to the future. Pharmaceutical companies are not just the makers of medicines. Now they manage diseases. Doctors still have a role, and pharmaceutical companies market to them, but they're not in charge. Thirty eight percent of physicians report being influenced by patient requests pertaining to their pharmaceutical needs.

To be effective, pharmaceutical companies need to address a host of different audiences. The new pharmaceutical company is marketing to many different audiences, including managed care, insurers, pharmacists, allied health plans, executives and employers, patient advocates, voluntary organizations, and consumers. Companies need to know a lot more about consumers.

What drugs are they using? What is their experience with drugs; their lifestyle; their perception of pills, medicine, and the health care system? What is their level of health care literacy? Are they more fearful of drugs or pain? Consumers want more information than they get. (A slide shows that 81 percent of those age 18-34 want more medical information and that only 57 percent of those over 65 want it.)

What do they need to know? How to deal with managed care, use medicines, improve care giving skills, communicate with doctors, prevent disease, and detect disease early. The question of the 90’s is, "How do we connect with patients?" One way is through partners -- contracting with Pharmacy Benefit Management Programs and connecting to the pharmacists -- by working with connectivity technology and with patient groups.

Pharmaceutical companies also connect directly with patients through direct advertising. In fact, 1997 might be the year the industry breaks the $1 billion mark. Barely $50 million was spent in advertising in 1991. The early ads were only for drugs that treated non-life-threatening diseases, but now they include more serious diseases as well. Most pharmaceutical companies have web sites and are using direct mail. They are taking a broader role in health care and have elaborate disease management programs run by direct mail.

Many companies are talking to patients by phone, to make offerings such as triage to Alzheimer's caregivers and a connection to local resources.

Companies are also getting involved in event marketing. I saw a booth for Claritin at the Philadelphia Flower Show.

Public trust in all institutions has gone down, and our industry is no exception to this trend. There are issues of privacy and regulatory concerns. There's a lot to be gained by forging stronger relationships, and there's not much now, but it won't take long to catch up.

Feffer: The talk is on doctor-patient partnerships and making them a reality. The idea of building these relationships doesn't mean a lot when doctors work on a minute-to-minute basis. What I want to suggest is a coming sea change, where the issue moves outside conferences like this one. I'll talk about how this is becoming integral to the health care delivery system, the things causing it, and what's necessary to accomplish it.

A concept that is essential to this discussion is that we are operating within a reality that drives everything that goes on. We must redefine roles, particularly of the patient/consumer. We can say we will do this. But the fundamental belief has not changed, and that is that the consumer is not a provider, but a patient. To reset our way of thinking, we have to ask questions about what's important.

How many health problems does a family have a year?

What most people typically think in reaction to that question is 9, 12, 15, and these are the things they go to a health care system for.

What are the most important components of diagnosis? Statement and history. Most emphasis is not placed on the history, but rather on presenting information to the patient, which can assist them in being actively involved in diagnosis.

In chronic illness, how often is there compliance with the physician's recommendation? Less than 50 percent of the time. So billions of dollars are spent on medical care. But there is no proper follow through on doctor’s specifications. I'm raising these issues to show that this is not a hypothetical. Eighty percent of all care is provided in kitchens, bathrooms, and the workplace--by people in their own homes.

Think about the consumer as a provider of care. This is fundamental to the whole discussion so that doctor-patient partnerships can become a reality. When the traditional roles are upheld -- the doctor as provider, and the patient as throughput -- the patient is treated as an object. It's very mechanical, lots of hands-on medicine, and now more so in the bureaucratized medicine of the late 20th Century.

Past pressure to change this has largely been brought by consumer advocates, based on philosophy. They wanted change because it was "the right thing to do." My father is an orthopedic physician, and he was at a meeting where a discussion came up about chiropractors. The orthopedics started hyperventilating, and my father told them to be quiet. He said, "The reason the patients go is the chiropractors talk to people and then listen to them. Until you do that, they will continue to go to them."

Results have been slow and steady. The new roles that I envision are the patient as the provider and the doctor as coach. The doctor is still the healer, but these are distinct new roles. Neither is particularly ready for this. These traditional roles are entrenched over the course of humanity. We had shamans in Neanderthal days, and many cultures have old priests with the keys of life and death.

There are current pressures for change, and these are critical to the sea change. If you list the top 10, financial incentives are 1 through 9, and all the rest combined are 10. The change in economic incentives is there, and it is real. Right now, physicians have responsibility for $250 billion per year of care, but as they begin to manage the entire process, the total amount they can control goes up to $950 billion. The costs related to avoidable lifestyle diseases are billions of dollars. And with the new Medicare and Medicaid risk contracts -- you're now having higher risk patients, which is different from the early days when most pools were low-risk patients. Baby boomers are more actively involved consumers. Data are out there that this process of involving the patient works. It keeps people happy, and it keeps them as customers.

If you look at just the adverse drug effect data, you see that there is tremendous cost associated with bad doctor-patient relationships, or with patients not following through, or with doctors not explaining properly. The cost amounts to 115 million extra visits, 76 million extra medications prescribed, 17 million emergency room visits, 8 million hospital stays, 3 million long-term care cases, and 200,000 deaths. There are enormous inefficiencies in the system -- these costs add up to $76.5 billion per year. For more information about how these statistics were determined, see the article by Bootman in the Annals of Internal Medicine.

Because of these systemic impacts, changes will be rapid and dynamic. This will occur, I predict, in the next 5 to 10 years. What it's going to take will be a financial disaster with some of these Medicare/Medicaid risk contracts. Someone will take on the risk, have no idea what they're doing, and they'll get cleaned out. That will be an incredible wake up call. I heard about a case of a group taking on a Medicaid risk contract that was already losing money, with no system for handling it. Their attitude was, "We'll handle that when we get to it."

There will be new expectations and attitudes -- medical groups will see that there can be more education. There will be changes to the medical school curriculum, and there will be national media campaigns. How did we get rid of other negative stereotypes like Dick and Jane? We show consumers as intelligent providers of care. Right now, we don't think that way, and we have to portray consumers in this positive light.

Information must be useful, credible, and available. Exciting things are going on, but we have to think, does our approach work?

Audience: During the history talk, I wondered whether advocacy in health came from advocates in the public health domain. Is there an important role for doctors as partners and advocates in keeping people healthy? We can talk about meaningful changes from one end to the other. But we also have to deal with people whose circumstances determine their health more than their personal actions of caring for themselves.

Rockefeller: That's an interesting point, and it has to do with the physician's role. We're taught that we have a big role in detection and prevention. But it's been done better by the mass media. The bigger systemic question is, What aspects of society have some role to play regarding peoples’ health?"

Audience: I'm making a radical suggestion that the physician’s role is as advocate, and their partnership with patients may be in other areas.

Feffer: When physicians have responsibility for the dollars, I think people will get increasingly creative. New partnerships will be seen that haven't existed before.

Audience: I would like to ask for a prediction about what happens when the patients are truly involved. What are the unintended consequences?

Rockefeller: Many members of families of chronically ill patients are already overburdened by their responsibility as care providers and by the knowledge they must obtain. What can be consequences to them in taking on more responsibility that was once handled by physicians?

Feffer: People will fall through the cracks, with tragic results.

Wetzel: Misinformation will cause a lot of anxiety and fear.

Clancy: We talk about people as patients and partners as if they want the knowledge. The people at the other end of the spectrum don't care and don't want to be involved. Our challenge is to find engaging ways to bring those people in. Society has to get going.

Rockefeller: There's no short answer. The target is shifting rapidly. There's a mismatch between what the schools teach and what doctors do. Medical schools have the least incentive and are slowest to change. The long-term answer is, first we have to select a different cadre of people -- people interested in caring for patients. It's hard to know where they will come from and how dedicated they'll be. Will a doctor with an artistic premedical background stay with sick patients overnight, as we expect current traditionally trained Type A individuals to do? Enough people out there will be satisfied by the results of forthcoming changing roles for patient and physician. But I'm not certain.

Audience: What is the role of computers with regard to the patient-doctor relationship? What can this technology do?

Rockefeller: The only thing I can say is that the computer will look different 5 years from now. We won't distinguish between a computer and a telephone. It will play a more active role, and it will enable us to tailor information to the needs of the moment. That means accepting many different kinds of inputs of information and on-the-spot outputs depending on the users and their current needs. The system will not materialize to this extent until the problem of the lifetime medical electronic record is solved. This is the biggest obstacle at this time.

Clancy: The issue is decision support. This cuts across the spectrum of how humans interact with the world. The banking industry has far better tools in this area than medicine. Other groups such as bankers will lead the way, and we should learn from them.

Feffer: This computer system is creating a new sense of community, helping to change roles by showing new relations within the community. One more thought -- there could be an adversarial relation between the two types of individuals. The patient won't know how to be a provider, and the doctor won't know how to be a coach, so we have to know how to help.

Audience: As a medical librarian I've had many patients come to the library and ask me questions because they can't get in to see their physicians. The doctors aren't available to answer questions. If they can utilize the computer as a tool to talk to you, trust me, they will do it!

They come to me because they can't see their provider. Then partnership is possible and we're not in a desperate situation.

Clancy: I'd like to thank the panel; please join me in doing so.

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