Conference Keynote Address - Reed Tuckson, M.D., President, Charles R. Drew University of Medicine and Science

Introduction

Thank you and good morning. I know there are some people I cannot hear back, but I can see you all. Good. It is important that we all have energy for this.

I am extremely happy to be with you today, and to be a part in a defining event in the history of health care in this nation.

I remember a similar conference a few years ago. It turned out to be an important defining event for much of what you all do. It focused attention on the energies of a society poised to enter a new millennium. So here we are again. I think this conference reflects a healthy recognition of the changes going on and the need for careful thought about the careful coordination of these forces for the health and survival of all Americans, all Americans.

A New Millennium

I'd like to single three of these revolutions. First, the reunion of the schizophrenia that has characterized our health industry for the past few decades, a health care industry that was concerned with the disease model as opposed to the reality and interactions of the human being and the complex social and environmental factors in which they live and in which their health is determined. This system was specialty driven, unaffordable, and inaccessible to many people. We got many benefits, and it was a wonderful deal, but maybe because I'm young, I missed the good days of that system. It had its benefits, but the problem is we spent all the money, and we could avoid the responsibility to our distant patients. The system is very authoritarian, so the patient was at the mercy of an impersonal powerful doctor. Now, we are interested in managed care, and in the patient as a member of a community. We are concerned with more cost-effective decisions and the therapies that might be arrived at. It is a new situation called public health. So think about what we've done here. Where we are at this moment is the reunion of the schizophrenia of the discipline. We are in a very pregnant moment.

Number two, as a revolution, health care is moving rapidly away from the hospital dominated systems, to places outside in the community and even in the home environment. It is thus becoming incredibly competitive and more quality oriented. We are extremely involved in this revolution of how this business occurs, and how patients will navigate through this system, what information is available, and how it will be applied as they interact with this business system.

Third: the revolution might be characterized as the transition from an industrial economy to a knowledge based economy based on advances on computing and communication technologies, improving access to individual citizens, who are also patients. There is a decentralization of this technology and information into the home. Look how we can live today, where we can get everything brought to the home. We don't want to leave. The home becomes an extraordinarily important place. It will become the focus for so much of the activity of the future. It is also where people go to connect with others in a new community known as cyberspace. The population there is expanding incredibly through commercial services, the Internet, and the Web. The genie is already out of the bottle, and it cannot be put back.

I have them all. I spend all my time playing around and surfing, and drowning and so on. Look at what was on America Online the other night, a discussion on informed decisions for alcohol treatment outcome research, choosing therapists and other medical services, how to interview a physician, informed consent and my rights, life time probabilities for breast cancer, and more. If I wanted more sophisticated information, I could get clinical guidelines for heart therapy. I'm one smart patient. As I look at these little forums, support groups, they will tell me the best equipment, doctors, and what symptoms to look for. They are now so good, and well organized, and particularly organized by those with a rare disease. They are all talking to one another, so all know what clinical trials are going on and making them more difficult to manage. You find people demanding experimental drugs even if it is not known if it is safe.

We can also look down from this perch and still look at the preventable disease and death that still afflict our community. We can see how much distance there is to the goals we have. With all this wonderful stuff, still tonight, one hundred women will cry themselves to sleep because they will have lost their baby in the first year of its life. Preventable disease, preventable trauma and accidents. By this time next year, 70,000 black men will die of preventable diseases. So we are gathered together at a unique and important moment.

New Opportunities and New Partnerships

We have an opportunity to bring about new partnerships. We come from all sorts of backgrounds and positions. We are leaders, foundations, leaders in information sources, libraries, administrators of managed care, practitioners, employers, telecommunication and computer industry leaders. In the final analysis we are here to keep faith with the larger questions of your work. The reason we gather, I hope, is linked in the final analysis, as was said by cellist Pablo Casals.

Back in the 1920's, Pablo Casals wrote, "You ask what my legacy to the world is, it is the lesson of never losing touch with life, one's own and that of others, to resist doing things that have no meaning for life." What then are the critical questions that lie at the heart of this conference?

We must keep in mind, what we are trying to accomplish? How do we use these new tools to assist us in keeping faith and best serve the health of the people, and do so without adverse consequences to their quality of life. Certainly we should not be seduced by the new toys. How do we prevent technology for technology's sake, information for information's sake?

I have spent many nights playing with public online services. I accumulate lots of information, but I wonder how much wisdom. I'm driving my wife berserk, because I won't come to sleep. She asks "are you still playing with that computer?" I say I'm not playing with the computer, but with who the computer is connected to -- I'm a fanatic about connecting all this stuff. I fill out hundreds of computerized file cards, but in the final analysis I didn't read any books -- no Shakespeare, no Toni Morrison, or James Baldwin, and I'm concerned about drowning in my information and having no greater wisdom.

On the other hand, I'm learning more rapidly, enjoying the exhilaration of nonlinear random learning. I'm swinging along in a random way, and I wound up in this computer with all these goodies, and I hadn't thought about that association or that connection, and I'm building a tree that flowers and blossoms. Eventually the computer can't even tell you how to get back, and you just cancel and get home.

As we assemble new information in new ways, we build a new compass for our learning. This applies to us all as guides and counselors to others.

The clear focus for our meeting is to collaborate on health technology that assists individuals on making better decisions. To be successful in this we need to better understand and define the appropriate and evolving relationships between patient and care providers. Much of this will be beyond our capacity to control; most of us are here out of enthusiasm for the technology, but what are the implications of letting the genie out of the bottle? Is the question irrelevant because we can't control the situation, the Internet? The self empowerment of the American people is beyond the capacity to be able to control.

If the patient has easy access to a wide and deep pool which they can access as often as they want, then their presentation to and expectations of their provider may be significantly different. If they can sample whatever is out there, you can expect a different person in the arena. Smarter patients can become more demanding, and may tailor their treatment from many different sources. They will go to providers not for information, but for judgment, wisdom, and experience. They will present more complex challenges, asking for judgment, wisdom, and experience from their provider. The easy days are over, of four-color brochures and prescriptions; the patient will say, "no, we're having a deeper conversation. I'm coming here with a load of stuff, and I need more than that."

Given that so much of their lives will be in context of what happens in their homes, the provider may provide context for patient-generated data. Patients will be able to download their imagery studies for second and third opinions. I saw a beautiful, elegant, CT scan of the liver; the patient will not be long from using this to get opinions from Iowa, Vancouver, and Hong Kong.

We will have to watch the doctor-patient relationship over the next few years; since we can't monitor the quality of information the patient gathers, much provider time could be correcting errors of fact or interpretation.

It will take great thoughtfulness to develop criteria to evaluate health providers. As I am looking at studies coming across computer systems, even if they were very clear, what if a doctor made a diagnosis without primary materials in front of them? What about the impact of missing small things, even with the visualization technologies from the industry.

We have the issues associated with efficiency, cost, and price. How will the time be compensated? Who, at what rates, or by whom? Are these collaborations valuable enough that the plans will provide dedicated funds? Will there evolve a new type of consultative provider? Would it be desirable to have online practitioners? Can you see telecommunications providers giving this expertise as a part of their online services? Can these make the process even more costly, inefficient, and frustrating?

Given the reality of the competitive environment, and the importance of the satisfied patient, will that force physicians to change their behavior? Will we be able to provide the need for judgment, wisdom, and experience?

There are important issues in access and equity to this information. Few leaders spend time thinking about it, but 40 million Americans still have no insurance, and it is not known if competition will lower prices enough. Questions about who will pay are important for the poor, who already shut out of the system. We are aware of present technologies not available to many Americans, and now, more toys and things that will separate the American people, and stuff people won't have access to as they continue to die. If we can't solve the problem of the 40 million now, is it appropriate and is that right? Of course, there are complex equations about preventative behavior and how these technologies impact that. While computers are making these more accessible, it is not the computers that are relevant -- the issue is what is the computer connected to, the business costs for time on the networks.

Does this increase the gap, and if so, what are the implications of that? Glad to have Vice President Gore working on this, but I have a feeling that in the present climate, there will be no compassion from those controlling the purse strings. We are going to the private sector folks, and asking them for the money to put in these infrastructures, to put access into poor communities. So we are putting our own poor community on the Internet.

If we are to overcome the isolation that the information age presents, we must pay attention to community partnerships, and help create an environment to help people take advantage for their best interests.

If we're going to be stuck in isolated cubicles staring at screens, how in the world will we create a community environment that will have a relationship between public health and private care? We must be very careful that these highways are not going off by themselves, but reinforce a sense of democracy and community with a larger agenda than our own walled-off isolation. I hope we stick to Casals' premise, and we are purposefully driven with respect for life, and resist distractions from life.

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