1997 Partnerships for Networked Consumer Health Information Conference

Transcripts of Plenary Sessions and Breakout Sessions

"Using the Information Superhighway to Reach the Underserved"

Monday, April 14
6:30-9:00 PM

Keynote Speaker: Reed Tuckson, M.D., Charles Drew University of Medicine & Science, Los Angeles

Michael E. DeBakey, M.D., Chancellor & Distinguished Service, Baylor College of Medicine, Houston, TX: Five years ago, The Friends of the National Library of Medicine (NLM) did me the honor of naming The Michael E. DeBakey Library Services Outreach Award after me. I would like to bring up a past recipient. Mary Jo, would you please come up and announce the award.

Mary Jo Dwyer, Senior Circuit Librarian, UTHSCSA, San Antonio, TX: As Chair of the 1997 Awards Committee, I am pleased to announce that the recipient of this award is Donna Johnson of Allina Health System in Mississippi. She serves Eastern and Western Minnesota and Western Wisconsin. Ms. Johnson is no newcomer to outreach. She began working with rural hospitals in the mid to late 1970's. She received a medical library resource grant in 1981 in the first round of funding from NLM. The success of the Allina Library Outreach Services Program is measured in its 20-year longevity and by the fact that most of its sites are still participating. It provides professional library services at an affordable cost. Ms. Johnson is a pioneer. Dr. DeBakey will present this award, and there is no better way to receive it than from his hands.

Donna Johnson, Director, Library Media Services, Allina Health System, Minneapolis, MN: I am very delighted and honored to be the recipient of this award. That is all that I have to say. Thank you.

Paul Rogers, Chairman, Friends of the National Library of Medicine, Washington, DC: It is now my pleasure to introduce Susanne Stoiber, who will introduce our featured speaker. Ms. Stoiber is currently Acting Deputy Assistant Secretary for Health Disease Prevention and Health Promotion. ODPHP is the convenor of the Partnerships conferences.

Susan Stoiber, Acting Deputy Assistant Secretary of Health, and Acting Director of the Office of Disease Prevention and Health Promotion, Washington, DC: It is a real privilege to be a part of this conference. I heard so much about the first and second conferences. When Mary Jo said that it was going to be in Washington I was determined that I was going to get to it. But I didn't imagine that I would have the pleasure of introducing Reed Tuckson as your keynote speaker tonight. I knew the pleasure that his presentation would bring to you because I watched the video that we made when he presented some of the same information at the very first conference. He doesn't know this, but we actually play that video over and over again in the Public Health Service. He was a legend in the Humphrey Building, Parklawn Building, and other associated locations. He made one of the most compelling and wonderful statements of public health communication, and we still get calls for that tape.

Tuckson is President of the Charles R. Drew University of Medicine and Science, a private academic institution in South Central Los Angeles. He is currently President of the Association of Minority Health Professions Schools and an active member of the Institute of Medicine of the National Academy of Science. His interests are reflected in his service on boards and committees such as Baxter International, Inc.; the Foundation for Health Services Research; The Health Care Forum; Catholic Charities USA; Research! America; the Black Community Crusade for Children; Children Now; and United Way of Greater Los Angeles. Dr. Tuckson was educated at Howard University; received his M.D. from Georgetown University; and trained as an intern, resident, and fellow in General Internal Medicine at the Hospital of the University of Pennsylvania. His theme this evening is "Using the Information Superhighway to Reach the Underserved."

Tuckson: Good evening. First of all I know the first rule of the dinner speaker is to be brief. I will do my best.

It is a very great pleasure to be with you and to have this opportunity to explore some of the difficult, but I think stimulating, challenges posed by this topic of using the information highway to reach the underserved. I am privileged to be with an audience of serious thinkers and creative doers in a field of increasing and obvious importance to our professions, to our industry, and to our Nation -- because it is the essential nature of the work that ultimately brings us together. It is the profound and principal concern for the survival of human beings that serves the essential moral mandate for the health-concerned professions.

I am so pleased that this conference seeks to explore ideas that are concerned with the fundamental issues of social equity and justice as they relate to the use of information and information systems in promoting health and preventing disease, prolonging life, and maximizing the full individual human potentials of all of the members of our society. Clearly, information and how it is used can have a profound effect upon the improvement and equity in health status of individuals and their communities.

As committed health professionals and committed health-concerned professionals who are learning to master the new tools of this field and who are influencing the design of new systems, we have a challenge. Our challenge is to discover the opportunities and the pitfalls that lie ahead, and to see that the interconnected issues of health, social justice, and fairness are responsibly addressed. As such, it seems to me that the first major concern has to do with the larger social context against which these considerations are played out. By now the Tofflers' analysis of the pillars of power, and the historical shift from agriculture to industrialization to information as the center of power, has become well known. The ability to produce, assemble, distribute, access, and process information is clearly the key to power in the coming era.

We have so much information coming so quickly that if you can't handle it you, indeed, are left behind. You become increasingly irrelevant. Given the new competencies that informatics will demand for the workplace, there is a very real danger of leaving out large numbers of people who are now irrelevant, with no place in the American-global interconnected economy of the future. And just as we are seeing an alarming bifurcation in the control over, and the access to, economic power in this Nation, so too are we are seeing in health a bifurcation in access to the power of information.

You know we are now seeing too, this bifurcation around income. Have you noticed this lately? It is absolutely extraordinary. More than 40 percent of all of the wealth in this country is controlled by 1 percent of the American people. This is a trend that is getting worse with each passing day. And the number of people who are poor is growing, and they are falling down to the bottom very gradually. We are seeing a shift. We are seeing a real bifurcation in the wealth of this country, and now we are beginning to see two-tiered marketing in our Nation. The only folks that made money at Christmas time in sales, with the fourth-quarter results having come in and been analyzed, were Tiffany's and Wal-Mart. Just complete, opposite ends of the spectrum. But what is really scary is the way in which products are marketed -- that now it becomes real clear that we are able through medical advertising and mass media advertising to base our marketing on demographics -- on what income classes watch which television shows. A potential customer is qualified before the pitch is made to them on the basis of the demography of television shows. We know which rich folks watch which television shows and who watches these other shows, and the commercials are specifically geared to different ends of the spectrum.

Now that makes me very nervous. Because now with the Net, sellers and advertisers are able to much more precisely profile their customer base and then focus on more specific subjects of the market through push technology -- what someone thinks you need to know will be sure to be pushed in your direction. In the final analysis, many American communities will become completely unaware of certain information, of certain ideas, of certain products and certain opportunities, and they will be unaware that they are, in fact, unaware. This is very dangerous for the notion of an American democracy. It structures inequity in that it fosters a further structural fragmentation between Americans.

The ability to craft a coherent and shared vision of the American future is essential to the development of rational health and other public policy. But this ability will be significantly impeded in such a context. Can you imagine us trying to develop a shared vision that says it is important for every American as a matter of right to be healthy, to survive and thrive, and live up to our human potential? It's impossible to imagine in a context of a Nation that is completely preoccupied with subsegments and fragmentation based on income and generation of money where there is a push to market to specific income groups. This is a very difficult concept, to have any sense of shared vision. Without a shared vision, there cannot be rational public policy that allows us to have a coherent democratic experience as regards having necessary tools to gain access to the highway.

The paucity of computers in the underserved communities in America, and the relative inadequacy of those that are there to fully or conveniently take maximum advantage of the exploding resources, are major policy hurdles. Too much of the hardware in South Central Los Angeles is too slow and too old and lacks the computer power to really be effective at the level that you and I demand in our learning and our own information exchange. As we read about communities being built that are wired into the Net at the local university, I get real scared because in so many public housing developments you weren’t allowed to even have cable television. That was somehow a goodie and you weren't supposed to have any real goodies because you were lucky to get to live where you lived. So we have real discrimination issues to try to level any sense of playing field for the future.

From a user prospective, many of the social-based behavioral issues that imperil health also confound our ability to have full interaction on the Net. When we look at the social challenges for providing health care, when we say that it is very important that you take control over your own life and do all of these health prevention things, how do you do that when all of the bullets are coming through the windows and your kids are telling their momma that they want to be buried in the blue dress "cause I want to look pretty for you when I die"? All of which makes it real tough to be worrying about 2 percent milk. The daily survival challenges make it real tough to be worried about getting a message across that children should not be involved in sexual behavior because "I don't want you to get AIDS. Don't want you to be a baby making a baby." The thing that is on your mind is just finding the one person to love you. One person to care whether you live or whether you die, and we come around with the health message.

Well, then you come back and you say, "By the way, we want you to be involved in the Net because we have all of this information that is out there for you and you have a great opportunity to be experiencing and learning all of this material." I don't know about you, but my wife is about to divorce me because I am an Internet addict. I feel like I have to go to the IAA. My name is Reed Tuckson and I am an addict. I can't go to bed because I might miss something. The Chicago Tribune, I haven't read that yet. It could be the thing I need to really make me good today. But the bullets are not coming through my window, and my child did not tell me last night what color dress she wanted to be buried in. And so hopelessness and frustration and undereducation and disenfranchisement and lack of discipline and language and cultural barriers are all important to the provision of preventive health, just as they are important as compounded variables according to the work that we must do.

I saw a survey the other day about the use and knowledge of the computer system in a housing area called the Freedom House in Boston. Do you all know about that? They did a survey on the residents -- this is not a scientific survey-- but it is instructive. They asked the people that live there the following about their use of computers and what they knew about the Internet, and this is what the residents’ responses were. While a majority of the residents, 58 percent, said they owned a computer, most did not know what kind or what brand they actually possessed. Most residents indicated that they did not use a fax or a modem or a CD-ROM drive. Very few, 6 percent, indicated that they use their machines frequently or on a regular basis. Three quarters of them said that their children used computers at school. One fifth of them said that they did not have any knowledge of their children's use of the computer at school. The major use of the computer was for word-processing activities. While an overwhelming number of the respondents do have telephones in their homes, many do not have voice mail, pagers, or cellular phones. About half of the respondents reported having cable television. A majority of the respondents were not familiar with terms like hardware or e-mail.

And there is a tremendous gap between the knowledge base between the people who are living in inner-city environments versus people living in your environment having similar experiences to yours. Information systems and their technology backbone are increasingly based on logic, and as such, Math and English are very important subjects. Independent negotiating and technology-motivated user manuals require a skills set, and many undereducated and less-motivated persons can become easily frustrated with this. However, despite those challenges, viewed differently, even in economically-challenged social communities, there is a strong market for, and a great expertise in, manipulating the use of technology. Rap music is a good and bad example of that. I am not a big fan. But the message is they are taking advantage of technology, mixing tracks and using technology. Even with rap they make good use of the knowledge of technology. We should not sell our children cheap.

How about what happened yesterday in Augusta, Georgia? It was an enormous and important message that is resonating through everyone -- that Jackie Robinson, Arthur Ashe, and Tiger Woods continue to be instructive in the destruction of stereotypes. This young black man is able to stand up with those corny clothes on and be a role model, and black kids all over America, including in the inner city, were paying close attention to him. And that is very important because he did not have an earring in his nose. He did not have hair plaited on up in a funny kind of way. He did not have pants hanging halfway off of his behind. He looks like a nerd and he is a nerd. And he is right now the hippest, coolest dude walking.

Invention, creativity, and the desire to learn and succeed are more often the norm than all of the published news reports of the never-do-wells. Let me explain for all of you policy makers because I gave you all of those hard realities. And it is hard in the inner-city, in underserved communities. There are folks who are really struggling everyday, but the majority of those people who are living in that environment really are trying to do right by their kids. They may not know the terms. They may not know the brand of computer, but what is more important is that they need a reason to know. Now you have a reason and I have a reason. If I miss a beat and you ask me about something in the world at a cocktail party and I don't have the answer, I don't get invited back. I'm not hip, I'm not quite "on it." "You know, he just is not quite cultured yet. He is not ready."

So I don't want to miss a beat. When I get information I am packaging it. I am assembling it. Why am I assembling it? Because I get to do something, no matter how small, about the nature of the events in this world. Doc is going to testify in front of Congress tomorrow. He wants to know everything because he is going to talk to some people, and when he finishes they have to listen to what he is going to say. And so he is always accumulating information because he is going to exert some dominion over the space he occupies. Those of you in this room, policymakers, really need to appreciate the power that you have. And that power doesn't have to be big power; it can be little power. It can be the power of convening people and listening to their contributions so that their opinion makes a difference. And once your opinion makes a difference, you have a reason to get information. You have a reason to get on the web. You have a reason to study and think. The reason is often as simple as how to make a nerd get on the web.

My son, whom I think is wonderful and brilliant and just got accepted to one of the best colleges – I won't say which one because you all think your college is the best one. When we first moved to Los Angeles we believed in good neighborhood public schools because I come out of a public sector mode. We put our kid in a neighborhood public school in a great middle class black community. And we knew that this was the best thing because our kid would walk to school and I could come home for lunch. The great American deal right there for us. And a week or two into school he wasn't doing doodly squat in terms of his homework. And we were wondering what was wrong with him. We were on him. And then he just busted out crying and said, "Dad, you just don't know how it is. Every time I do well in school the other kids come up to me and say that I am just acting white, there is something wrong with me, I'm a nerd, I'm a bad guy. I can't handle it." We got that kid out and three days later he was some place else. And I am still paying all the bills in the world.

We have this notion of trying to create a cultural social dynamic that says success is all right and it is okay to be Caswell Evans. Because Caswell is nerdy, I know him well. It is okay, Caswell, you are still hip with me. Tiger Woods I think will help us to transcend the pictures on the cover of Jet, Ebony, and Essence. I know you all don't read those magazines when you go to the airport, but I want you all to do a test just to see what it is all about -- to see the context of your work. The next time you go in the airport look at Ebony or Jet magazine and the cover. You don't have to read it, just look at the cover. And what you will see every time is an entertainer and maybe an athlete but never an intellectual. Never a person that makes a living with their mind or contributes to the public policy development of the Nation. Now that is not your problem, that is my problem, and that is something that I have to deal with. That is my community's work, that is not for you.

In the final analysis, the technological information revolution poses great opportunities for personal growth, creativity, and the simulation of information and data optimal for personal health. Multimedia learning tools can help us. If I am having trouble in school and that teacher is just boring and dumb, look at what the Net does for you. My RealAudio will actually let my computer talk to me. I can turn on National Public Radio at any time of the day or night, and it is talking to me like I am reading the news. And this is fun. If I want to order a CD I never go to a store anymore. I just pull up this thing and I can order it. I am going to buy stock in UPS. Because you are going to order stuff and somebody has got to deliver it to you.

But just think about the multimedia stuff and the kids who are having trouble. If I don't want to be a nerd or worse, I'm not doing real good in school and I'm not real smart, I don't want everyone else to know it. I really do want to apply it, but I want to be a self-directed learner so I can go on the Net and have other kinds of information and things at my disposal. Self-directed learning -- you know, I might just overcome that learning deficit. I might just overcome some of the challenges that I had before. I just might be real good. You say, "this is a theoretical thing, Reed Tuckson, and I am not sure about you."

Let me tell you about a real bright intellectual such as B.B. King. He raised himself since the age of 7, never went to school. He is an Internet addict. He is learning rapidly. It allows him to be himself. Just imagine the kids that play the rap music. They move things everywhere on the computer. If they can do this with music, why can't we convince them that they can do more with this information? Let them know that it is something more than jail at the end of the day. Let them know that they have more of a future. I hope that there is a grant maker out there who can help us do this.

Bringing this to closure, I have 3 minutes left. With regard to accessing information on the Net, the issue becomes, why is it important? Other questions are what utilities do we need, what is the added value for residents of underserved communities, and on whose terms is the information presented. As I experience the information shared on the Net, I am always impressed with the exceedingly practical nature of so much of the advice of the shared experience and the personal unburdening that specific online communities make available. It would seem to me that, for example, given the young people who live in underserved communities who have had their spinal cord transected by these little missiles coming out of 9-mm semi-automatics, that there would be a large market for information on feeding gastromity tubes and wheelchairs and management of ulcers. As you try to figure out how to rearrange your house so that little Johnnie can get in the door and move from room to room. And that all of that stuff is exceedingly practical and there is an added value. Any practical information that you need to provide, patients can deliver on the Net. They are the experts and they are sharing it with each other. And those are valuable things.

We do a lot of parent workshops for the people in South Central Los Angeles. You would be amazed about the questions that the people are asking when we talk about parenting. Let me ask you this. "Is it child abuse if I beat my child and my child cries?" What if pediatricians really could provide a place for innocent parents to ask that question and not feel stupid? This is a valuable opportunity, and we need much more information and experience. Given the purchasing power of the web, and even in the challenged communities, this might most appropriately be addressed, not by the policy advocates, but by the entrepreneurs. Even poor folk buy stuff. Ask Mr. Nike. And how long do you think before Nike has a web site for inner city folk and they will have everybody organized and it will be the Michael Jordan web site? Be the first in your school to know when Michael Jordan is coming out with his new tennis shoe and how much it weighs.

We did something at our place, and we pulled all of our community leaders together and had a conference called Agenda 2000. We were determined to bring all of our community leaders together and solicit their advice and guidance about the health issues and how we are to approach them. We put the information superhighway down as one of our major topics. They said, "I don't want the Government to have use of my confidential or medical records." There is this enormous distrust between the Government and institutional elites in the inner city environment. We are going to have to work very hard on this partnership. We are going to have to listen and be humble. Bringing the new technology blew their minds. Now we have moved to the next level with the simulated computer environment. These people are now able to deal with the public policy process. Now these community people are not coming in there mad and they are not screaming. They are coming in with an agenda. This gives them further incentive to be on the Net. Now the computer wasn't something scary. And now you can put your health symptoms in and find out what is wrong with you. And guess what? It turns out to be congestive heart failure, not diabetes. All of that was wonderful, and guess what happened? Someone came in and stole all of the computers. Because that is the reality of living in the inner city. So we have to find some more money, get some better locks, and buy another computer.

In conclusion, number one is that we have to unite the superhighway with empowerment zone activities to create resources to extend the highway fully. Again, just as we fight the public health fight, not alone, but in a larger, social context, we have to put this work with other work, and we have to extend it. Okay, so we are playing with this stuff over here and we are going to build a sand castle over here on the edge of the ocean. Then the tide washes in and wipes out your sand castle. It wasn't a good investment, and we are going to have to build our sand castles really tight and strong, and they have to be linked with other castles so that all of them can withstand the terrible forces that are pulling at us. So let's combine the superhighway with empowerment zone activities. This is economics. This is not a game that is friendly. This is about power. This is about who wins and who loses. This is about who lives and who dies. This is about who has all the money and who doesn't. This is about determining which kids are going to the great colleges and which kids are going to jail. This is cold blooded and mean. This is not fun. Those kids who don't get on the highway and who don't get empowered are going to be the ones to hijack your car. We are all in this together. So lets bring the money in, the empowerment zone.

Number two, we need to bring in strategic planning committees that link public housing, health departments, public schools, Head Start centers, and medical centers. We need to stitch all of that together now, and we have to listen to it. Please do not go there with the playbook out.

Third, we have to have medical information areas in the clinics at the time diagnosis is made, so that the patient can explore the library. They need to have the library on the ground floor. We need to have them go through the library so that they can find certain information. They need to have a library practice nurse. One that doesn't do bedpans, she does Computer 101. She shows people how to use the Net and look up materials. And finally we have to encourage the adoption of the Urban Telemedicine bill authored by Congressman Rangel that tells us how telemedicine can improve health care services to poor, rural, and inner-city communities by reducing the cost for Medicare.

Well, I am sorry I went a little bit over. I am a little bit worked up about this stuff. I just want to focus you in the sense of saying that, although the challenges are great, I am an optimist and I am pretty sure a lot of you are too. We should realize the potential benefits of new tools and a new way of doing things. There are great opportunities here. The answer to reaching everyone is not in applying the computer to solve the 15 redundant steps. But the real thing is to redesign the system from the ground up so that the computer could cut through and eliminate one of those steps and you would just have 14 of those steps.

This is a time for creativity. This is a time for excitement. This is a time for people like you who are prepared to color outside the lines and to reach people for whom it was never about the Internet. It was never about the modem. It was never about the search engine. It was never about the home page. The only thing that it was about was did all of the people get a chance to live. Did they get a chance to prevent the unnecessary misery and suffering? And what was the quality of that survival? That is the only thing at the end of the day. Thank you very much.

DeBakey: Reed is kind of an interactive, multimedia presentation in himself. Mary Jo Deering wants to make a couple of points about that.

Mary Jo Deering, Director, Health Communication and Telehealth, U.S. Department of Health and Human Services, Washington, DC: Well, I have listened to Reed three times and always feel moved and energized. We have Reed Tuckson on video, and he can share himself in multidimensional ways.

DeBakey: We are delighted that Secretary of Health and Human Services, Donna Shalala can be with us tomorrow morning and Vice President Al Gore will be virtually present (via videotape). I don't want to spoil our morning show. The General Session will begin promptly at 9:00. Thank you very much for coming, and I hope you have enjoyed yourselves. Goodbye.

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