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Chapter 21: Making Health Information Available to the Public: The Federal Opportunity | Data for Science and Society: The Second National Conference on Scientific and Technical Data | U.S. National Committee for CODATA | National Research Council

U.S. National Committee for CODATA
National Research Council
Promoting Data Applications for Science and Society: Organizational and Management Issues
 


21

Making Health Information Available to the Public:
The Federal Opportunity

Donald Lindberg




     I appreciate the privilege of being with you. This is a remarkable time because we are seeing the convergence of three capabilities--the computing, the intelligent communication networks (which may be even more important now than the machinery itself), and an ability to manage these digital technologies. These capabilities are essential for contributing to scientific discovery, and good medical practice, and for sharing medical knowledge. I'm not going to talk to you about the first two, scientific discovery and good medical practices. I'll talk with you about sharing medical knowledge--what the National Library of Medicine (NLM) does. For the NLM, consumer health information is a top priority. I really like to think about it as information for the patient, the family, and the public, starting from the patient.

     In 1996, we made MEDLINE searching available on the Internet, and in June 1997 this searching became free of charge. This was important to NLM: if we were to undertake to provide valid scientific and medical information to patients, families, and the public, it had to be free. It is because of the Internet and the World Wide Web that we could do this. In fact, we made using the Web a condition of free MEDLINE searching. The Internet is not just political window dressing: the Internet is the best communication system that our globe has ever seen.

     From that point of view, and as major purchasers of telecommunications and value-added networks back to 1970, we know how to get good prices. The Internet is one-fifteenth of the best price you can get on bulk value-added networks. This made a big difference in reducing the cost of actually getting information to the people who need it. The World Wide Web is a technology that allows us to avoid the very costly problem of maintaining software for multiple computer platforms.

     As a good library, NLM always provides any information to anyone who asks for it. We don't ask if you are a doctor or nurse, you are over 18, or whatever. We have always dealt with the public and provided anything we have. There is no classified information at all, ever, at the NLM.

     The NLM previously (pre-Web) operated at a level of about 7 million searches per year. Within a year of MEDLINE's becoming freely available, this figure remarkably multiplied by 10--up to 75 million a year. The thing that impressed and surprised us was the percentage of these searches that was done by members of the general public--that is to say, non-health care professionals, non-research scientists. We were astounded, because formerly this was less than 1 percent.

     Formally, users were not put off by the search charges. Bruce Alberts was very kind in mentioning MEDLINE in his introductory speech, but when he said that he would pay up to $100 a search, that's a really complicated scientific search. A search for an ordinary patient-oriented problem would be more like $1.50 to $2.00, at most. We knew doctors were cheapskates, so we knew that searching would go up when MEDLINE became available for free, but we did not know that it would go up this much. We did not know that the members of the public would react so enthusiastically. Today there are 250 million searches per year. Searches have increased twentyfold. It's really quite astounding to us.

     We were surprised with this increase, because the writing in the scientific literature can be terrible. It isn't any better in one of our disciplines than another. It's stuffy, stilted, and formal, and it's hard to read. On the other hand, we have come to realize that if you are ill or a member of your family is ill, maybe you'll read it more than once. Maybe you'll look in a dictionary. Maybe you'll ask a friend. Then maybe when you see the doctor, you've got a good set of questions in mind. There apparently has been a pent-up demand for biomedical information, which was not being satisfied.

     Of course, people are different today. The population is different now from what it was 40 years ago when I started studying medicine. We used to have serious discussions when I was a medical student with a professor of law about whether the patient should always be told the truth. People don't talk that way anymore. The general public is better educated and more willing to take part in medical decisions than it used to be. People really have changed in that respect.

     PubMed is one of the programs that search MEDLINE, the one most heavily used. It has worldwide accessibility. There are many outlets in the sense that we license it to a variety of companies and 47 universities. Some schools, such as the University of California, like an integrated system. The University of California has a system that involves book holdings, and it wants to see this integrated with the journal holdings.

     MEDLINE is fundamentally for physicians and scientists. We could discuss changes in the corpus of scientific knowledge that are relevant to modern medicine, but MEDLINE is definitely aimed at scientists and physicians, although it is now used by the public as well. Armed with this knowledge, we created a database that is aimed at patients, families, and the public; we call it MEDLINEplus. Our initial goal was 400 health topics, and we have something close to that. Although it's not complete, I'm willing to share my ignorance with you.

     When I was preparing this talk, a friend asked about macular degeneration, a bad eye disease. So I decided to use this as an example. I went to MEDLINEplus, picked the category "eyes and vision." If you click on this category, there are more lists, and macular degeneration is one choice. One of the things you can find is explanatory information about this disease, including a diagram of the eye. It comes from the National Eye Institute at the National Institutes of Health (NIH), and you can go to various levels of detail.

     You can also access clinical trial information, which is a database we recently launched. It actually was under testing for about eight months. It combines 4,000 clinical trials supported by NIH, so we are acting on behalf of all the NIH institutes. The development of this database was driven by legislation called the Food and Drug Administration Modernization Act of 1997.

     The database is accessible at www.clinicaltrials.gov. Users can see which trials are recruiting; that is, one can obtain admission to the trial if it is still looking for people to participate. The search can be bundled, since some people want to look at trials only if they are open. Others are interested in whether they are open or closed, or they just want to understand what the possible treatments are.

     Why would anybody participate in clinical trials? They would do it if they had a bad diagnosis, cancer or otherwise, and were told there wasn't a good treatment available for them. To some people, it isn't unreasonable to simply say I want another doctor or I want another diagnosis. I want an alternative, and this is a way to get it.

     Another link in the databases gives a description of what's going on in the trial, what it is trying to achieve. In the case of macular degeneration, there is information about eligibility. It will tell the patient if he or she might be able to participate. You can also search the clinical trials database by the phase of the trial and location of the trial.

     This database is a new venture, and so far it is going pretty well. We have established linkages between the databases, and the explanations and the diagrams are where most of the value of this kind of a system lies. Users also get access to information outside the NLM through MEDLINEplus. For example, there is a linkage to the Macular Degeneration Foundation, a society for those who have an interest in or maybe have a patient with this disease. It's a self-help group, but it turns out that this is tremendously helpful to patients when they are ill, particularly with a chronic illness. It's very consoling and often practically helpful to know what others with that same difficulty do in terms of management of children, household, medical apparatuses, and even treatments. We find that putting patients in touch with these kinds of foundations is a very good thing to do.

     We know that the NLM is far from the only source of health care information on the Internet. There are many more. I'm not going to offer you a critique of what I think about the other sites. All I can say is if you come to the NLM site, you come anonymously. We don't ask anyone's identity. We don't keep records of who asked what questions. We don't sell your identity to people for other products. So I'm not at all against there being good sources of information, but I would like there to be at least one safe refuge.

     Genetic information for the public is a special case. The National Center for Biotechnology Information, a part of NLM, provides such information. For example, there is a link to genes and disease. At that site, a user can pick out a chromosome or view the sites where some particular ailment has been identified. A user can choose asthma and get a good textual explanation of what asthma is. It's certainly suitable for high school and college-level people, complete with graphics and so forth. You can access precompiled MEDLINE searches. In the case I am showing, it tells us a genome-wide search for asthma susceptibility loci in ethnically diverse population, and you have a full text.

     What have we learned? I said the first thing we learned is that people really are different from what they used to be. Although many can and do use scientific databases, outreach to the public is essential. Not all parts of the country have the kind of communications you find in Washington, D.C. Usability studies are valuable for both the public and scientists. The way that we present information is the best way we know how, but we have to keep learning better ways.

     I think we also have to look forward to the development of new technology. In my view, this will include in the area of linguistics, for example, a better-developed consumer health vocabulary. We have a meta-resource of some million terms from 51 thesauri. Foreign language equivalents are easier if you know the medical meaning. It's not so difficult to express a term in French, Spanish, German, or whatever. We all would like speech recognition to be more effective than it is at present. On the user interface side, handheld computers and wireless are working. Gesture is not yet working, but probably should. I also want to emphasize that the preservation of digital data is a tremendously important and difficult proposition, one we share with the other presenters on this problem.

     In another area, we are sponsoring a smart card project for the Western Governors' Association. Smart cards are now in the hands of some 22,000 poor women and children, with a medical record of immunizations on the card. It's self-actualizing. There is another project that uses a T-shirt with 80 sensors. These are really making telemedicine a reality.

     We also need privacy legislation. No one has mentioned it yet, but I think we all know this. I think it would be nice to have separate legislation on the fate of genetic testing data, because again, that's something people really worry about. And I agree wholeheartedly with Bruce Alberts that we absolutely should defeat the database protection bill.



Copyright 2001 the National Academy of Sciences

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