1997 Partnerships for Networked Consumer Health Information Conference

Transcripts of Plenary Sessions and Breakout Sessions

Plenary Response Panel 1: "Redefining the Roles of Health Professionals"

Tuesday, April 15
10:15-11:15 PM

Moderator: Don Vickery, M.D., Chairman & CEO, Health Decisions International, Golden, CO

Respondents: Albert Mulley, Jr., M.D., M.P.P, Chief of General Internal Medicine, Massachusetts General Hospital, Boston, MA

Charles L. Jacobson, M.D., Executive Vice President, Premier, Charlotte, NC

Caswell A. Evans, D.D.S., M.P.H., Assistant Director of Health Services, Director of Public Health Initiatives, Department of Health Services, Los Angeles County, CA

Beverly Malone, Ph.D., R.N., FAAN, President of the American Nurses Association, Washington, DC

Vickery: It is safe to say that 80 percent or more of you here believe that consumer health information is important. Let me welcome you to the church. We are a liberal faith.

I'd like to try to encourage a wide range of remarks, and I would like to first pose a pro and con argument. The pro argument is that information will radically change how professionals act. The con is that people won’t change much at all.

I think our roles touch on three traditional areas: diagnosis, prescription, and shared decisions. The physician has a duty to diagnose, but also to develop the probabilities of outcomes and an analysis, so the patient can choose which decision to go with. We already know there are methods and technologies that are superior for transmitting that information – and for relating the questions that users want to ask. If there is a better system, that technology will come to the forefront, and we will see a dramatic change. I'll note also there is no lower limit to use of this system.

Why shouldn't the patient do most of the selecting? We can ratchet it down all the way to giving them the choice with prescriptions. Remember, the Food and Drug Administration is required to remove our control over prescriptions when it is deemed safe for the public to decide on its own. Two traditional roles, prescribing and giving information, will transform and change with this new source of information.

That's all very well and fine. Now the con argument. What if the data aren't available? What if there is very little scientific information? What's the point of sharing information on medicine when the information isn't that good? Second, is the idea that physicians will be magically changed by this.

I have a story -- there was a middle-aged physician who had a mild heart attack. We provided information on three decisions involving possible procedures and outcomes. The man replied that, number one, my cardiologist is my guide on this; number two, when I'm under a great deal of stress from many different areas, I don't want to get involved in the numbers.

Patients often want more help, not more choice. Physicians take out the work of searching for answers, of trying to understand. Whether this support is necessary depends on if there's a desire on the patient's side to seek the information on his or her own.

Now, I'd like to invite our panel members to speak. Our first speaker, who I believe needs little introduction, is Dr. Albert Mulley, Jr., from Massachusetts General Hospital.

Mulley: It's a real pleasure to be here. I'm looking forward to your reactions. I had my own story about a vehicle. There was a ship on the high seas, and there seemed to be a storm gathering, but everyone on the bridge is warm and comfortable. There comes a message over the radio to change your course 10 degrees to the south. The men on the bridge send the message back to change your course 10 degrees to the north. The captain tries to call in. He calls in that this is a battleship and to change your course. The message comes back, change your course; this is a lighthouse.

Recently, the forces of change were obvious, involving cost inflation and the dispersal of information. Equally troubling was building a health care force that didn't meet the needs of society. Now, 28 percent of physicians are involved in primary care. Back in 1960, 50 percent were involved. We've got more specialists now. It looks like we have two and a half times the number of neurosurgeons that we used to. There is not a lot of attention paid to what the needs of the population might be.

I think another storm cloud on the horizon is the concept of practice variation. It comes across as overuse and underuse, depending on where you are. The quality of practice now depends on where you live, who you know, and who cares about you.

These are big forces for change. Think what that does to the scientific mantle of authority. Now we learn that the role of information exchange will be taken away from us. Eleven seconds is how long we give you to put out your question before we give up.

We are in the process of uncovering the true demand for medical services. I would argue that this is using technology to support professionalism. Professionalism as I define it is keeping and maintaining a knowledge base, and having the responsibility to meet the needs of others with that knowledge.

The inattention for patients' preferences, knowledge, and needs has done more harm than realized, just because we thought the problem was a lot simpler than it was. Think about the advertisements that you read.

I would argue that we need to think that the information revolution is an extraordinary development for the transmittal of information. We need to use the technology to capture the outcomes, to make us smarter, and to take better care of patients so we can better meet their needs and design new approaches.

I'll give you an example: When a woman gets breast cancer, it changes her life forever. Should she have the breast removed? Should she keep the breasts? What are the costs for her care? She needs information but needs context and compassion. That can come through the Internet vicariously or through a physician meeting her needs.

We need to face the storm outside of the bridge. We need to get down below decks and into that unknown area.

Vickery: Thank you very much. Our next speaker is Charles Jacobson. As the Executive Vice President of Premier's Financial Services, he is uniquely qualified to talk about this area.

Jacobson: I'd like to give you a brief travelogue. For 20 years I have been in a very nice organization owned by over 900 hospital systems around the United States. I've gotten the chance to travel around and learn what's going on. There's a shift in this society with cost control and sources of information.

When society gets a chance to share information, there is a reassessment of the role of the profession. Now we're looking at professions coming apart. Nurse practitioners are acting as primary care practitioners, and pharmacists and nurses are acting as primary information sources. What is the profession anymore?

The future is owned by those who improve cost and quality. The future of U.S. health care will depend on the distribution of services to peoples’ homes. Health care is moving to the home. I'm confident that much of it will.

My colleagues aren't doing very well. Many of them have put in 12 to 16 hours a day. They thought they got an opportunity, and worked very hard for it. Their opportunity to earn a living is dropping dramatically. Only a few are dropping the grieving process and getting on with it.

Hospitals find themselves in a similar dilemma. They tried to set up HMO's, and believe that the primary care physician is the entrance to the hospital. They figured that out 10 years too late. There are other good examples. What about multi-hospital systems? Are these organizations looking at the future? Not very well.

All the above systems suggest that they won't lead the future. Who's going to do it? There are lots of entrepreneurs out there. There are technological companies, and the list could go on. There are 50 or 60 interesting companies that are not bound by the past. Traditional structures cannot deal with this. Our future will be finding physicians more of a role. We are in a power shift, and the health care system will be developed from the outside. What will the future look like? It will be interesting to see.

Vickery: Our next speaker is Caswell Evans. He serves at ground zero of the public health arena in Los Angeles. He is the adjunct professor for the School of Public Health, and the School of Dentistry at the University of California at Los Angeles.

Evans: Good morning. Before going further, I have a reputation to live up to. Last night, at the banquet, Reed Tuckson raised certain issues of individuals interacting with society, and he termed me a nerd. I know that was a compliment. I feel I have this challenge to be a nerd, and I must convince you of my nerdiness.

The issue is really defined in the title of our meeting, networked consumer health information. I come with the perspective that the term consumer will very quickly slip from our lexicon. There is this interface between networked information and people that considers the issue of having more control.

There is this issue concerning community interests about having a healthier population.

The illness is affecting a particular individual. The community is in fact the patient -- all the individuals working together. How do we prevent disease in the patient, the community? How do we help? How do we treat, not one patient, but the entire community? It can be defined as a township, a city, a state, the United States, or global health, such as planet earth. We've got concerns now such as global warming or infection vectors.

Regardless of income status, irrespective of health plan, regardless of whether they are homeowners or homeless, all people count in the community.

Our most important missions are to inform people about risks, prevent disease, and protect health. How do we get this information out to people so they can respond in a way to improve their health status? Consumers provide that rich opportunity, to share a common vision. The end result and the product of that service are to improve health status.

Communities are expecting, and are placing increasing demands, on health care to provide that service. Public health serves communities very visibly at that time of communicable disease outbreaks. It provides a service and wants to stem the tide of that outbreak.

There are critical issues that must be accounted for. Who is going to be participating in this exchange of information and who is not? There are barriers to participation. One barrier is education. If people cannot read, they will face a substantial barrier. There are income barriers.

There are people who don't have access to computerized information if their major priority is to put food on the table.

But there are also data arriving that give us an important lesson. One in 10 individuals is foreign born. In California, I've been noticing what I call the Hollyweird experience. California is the wave of future in so many things. If you fail to see the future in California, you fail to see the future. One in four people is foreign born in California. They come from Mexico, Central America, and Asia. In the 1950's, the vast majority came from Europe and Canada. More Hollyweird -- the school district recognizes 90 languages spoken in the school system. In 45 percent of households, a language other than English is the chosen language in that household.

That tells us something -- that a large group of people are not participating. Between Spanish and Asian languages, an entire segment of the population is eliminated. The barriers for a network are considerable. Consumer information, to be effective, must be collectively ready to reach all segments of a community.

Vickery: Our final speaker, Beverly Malone, is the President of the American Nurses Association. Through her background, she can provide us with a needed perspective.

Malone: As we heard about the lighthouse, some people think it moved. I've never seen so many disaster films, but that is the feeling I've gotten when I've talked to my colleagues. It feels like the earth has shifted.

Everybody hold onto your boots; we are going to be in for a ride. We are in charge of the delivery of quality care for our patients. I have good news for my colleagues. We have an opportunity to refocus our relationships with patients, around the community, and in the family. We're talking about partnership -- not just with patients -- but among ourselves, too. As boundaries etched in stone are coming loose, how are we going to work together? This new networking is going to empower patients and should empower us to deliver better care to our patients. This is an opportunity to stand on the bottom for a change and to rally around the patient. This coordination of care, whether the patient is in a hospital or in the community, can be achieved together.

What are the roles in nursing? There is the clinical role. I have been a nurse for 11 years. Clinical expertise is not going away, colleagues. We are always going to have to go with hands-on care. There is nothing wrong with any of the new things, but it doesn't eliminate the need for individuals to feel the touch.

Our second role is as an educator. I value that role very highly. We have provided education, and it is an important part of nursing. Give them the information that they want. We have been educators since nursing began. One of the reasons that I chose nursing was this. Perhaps you haven't noticed -- I'm short -- I'm wearing high heels today. Advocates can be tall. That's very attractive to nurses -- patients will continue to need advocates. Those advocates are going to need good places to work. About 1.8 million people are employed. Others have figured there is another way to live. Those are the questions that need to be asked. I want to see every nurse involved in some level with the research, putting it into practice with their patients.

A third role is the administrative part of nursing. It's one of the things we've been specializing in for a long time. The fourth role is the consultator role of nurse. You can be asked in and you can be asked out. Patients are learning. The information role will be teaching them about that. I think our professions have an opportunity to stabilize themselves. We have an opportunity to prepare new providers in a multi-disciplinary way. We have this opportunity, and we should take full advantage of it.

Jacobson: Do you see our profession being able to respond in an effective way?

Mulley: The same as I see a battleship turning on a dime. The principle of professionalism really is our main hope. There are some reasons and values that are more revealing and long standing. I may be wrong. The issues are really complicated, but I really think we'll see pockets of leadership.

Audience: It's important to distinguish between knowledge and data. We're dealing with data, not with information. You don't provide someone with a hammer and tell them to build a house. It's a tool. We know where the tools are going, but the political will and the inequities of the political system are entirely different. I cannot assume that there is a revolution or that these data will provide the information people are looking for.

Mulley: It gives us a sense of the enormous forces that are aligned against this. There's a lot to be lost. There are enormous political powers, but I also think there are equally strong influences. In the long term, the outcomeof a networked consumer health information system will be a professional consumer-patient partnership, where professionals and patients will be empowered with that information.

Audience: I'm a nurse, and I've worked in two roles -- as a health educator and in critical care. There are two major factors for managing disease. One factor is the patient's emotional stability -- when they trust their practitioner. That emotional component needs to be addressed, and we have to take it and grab it, because it isn't on the superhighway. I've heard you speak to it -- can you speak to it more?

Malone: I think you said it very well. For me it's the touch piece, and every provider has that opportunity. I've seen physicians use that touch. That's how we are educated. I believe that is what is going to carry us through. There is a human component that needs touch.

Audience: Do any of you see institutions willing to use self-help groups and alternative practices?

Evans: That's really one of the fundamental keys for public health. It is another form of community, and one of the most powerful elements in health care. It is a powerful ally, and public health has not matured that relationship. Health care would want to nurture that relationship.

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