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Testimony on National Library of Medicine's FY 1998 Budget by Dr. Donald A. B. Lindberg
Director, National Library of Medicine
National Institutes of Health
Accompanied by
Mr. Kent A. Smith, Deputy Director, NLM
Dr. David J. Lipman, Director, National Center for Biotechnology Information
Mr. Donald C. Poppke, Executive Officer, NLM
Ms. Susan U. Levine, Budget Officer, NLM
and
Dr. Harold Varmus, Director, NIH
Mr. Dennis P. Williams, Deputy Assistant Secretary, Budget, DHHS

U.S. Department of Health and Human Services

Before the House Appropriations Committee, Subcommittee on Labor, Health and Human Services, Education and Related Agencies
March 6, 1997

Mr. Chairman, thank you for the opportunity to appear before you today. The last 12 months have been especially eventful at the National Library of Medicine. I believe it is safe to say that whatever preconceived notions one has about what a medical library is and does, the NLM shatters them. Previous support by the Congress is resulting in remarkable new information products that are finding widespread acceptance not only within the medical and science communities but, increasingly, with the public. I can also report that the Administration's "Reinventing Government" initiative has taken root at the National Library of Medicine. It is providing us with the latitude and efficiency to develop new products (such as the Internet Grateful Med described below) and to plan for major changes in how we will deliver information services in the future.

To demonstrate what has happened over the past year, I want to present a sampling from NLM's broad portfolio of information services: imaging databases that save lives, World Wide Web access to the world's largest computer resource of medical knowledge, a "human gene map" now available to all via the Internet, progress in reaching a full text retrieval for medical information seekers, and diagnosing and treating patients via "telemedicine." Let me explain. The Visible Humans: I reported to the committee last year about two very large datasets the Library commissioned based on the imaging of cadavers--a Visible Male and Visible Female. Last month's LIFE magazine features on its cover and throughout the issue a series of stories based on this project. One particularly poignant story is of a 12-year-old Rhode Island boy with a tumor on his brain stem that, unless it is removed, would kill him in a few years. The surgeon preplans the operation using 3-dimensional holograms, based on a practice method introduced with the Visible Male. The 6-hour operation is a success and the tumor is excised without disturbing healthy tissue. "Spelunking through the body" is the way scientists at the Mayo Clinic have described putting data from real patients into applications that were developed using the Visible Humans, and then using the computer to traverse through the anatomical structures to find and visualize the problem.

Last fall the Library held a meeting of some of the researchers who are using the Visible Human datasets in a variety of ways. There are more than 700 projects using the data, but a few will give you an idea of their range: non-invasive colon cancer screening, visualizing in advance the results of plastic surgery, rehearsing prostate cancer, training students to do spinal taps with a needle simulator and, of course, teaching anatomy. Although we didn't hear directly from them, Hollywood animation experts are even using the Visible Human dataset to create a movie character. Access to MEDLINE: Last year when I testified before you, we had just introduced the Internet Grateful Med. You may remember that this system affords anyone with access to the World Wide Web the ability to register with the Library and to search the immense MEDLINE database. The system is easy to use and no other software is required. Now MEDLINE may be searched not only by medical librarians, scientists, and health care providers--the audience for which it was originally intended--but members of the general public are now discovering its benefits. MEDLINE, as you will recall, is the Library's largest and most-consulted database containing more than 8 million references and abstracts to medical journal articles.

The instant appeal of Internet Grateful Med has resulted in a dramatic increase in the number of persons using the Library's online network--there are now about 150,000--and online computer usage statistics are repeatedly hitting all-time highs. Internet Grateful Med received another boost in popularity when Ann Landers printed a letter from Dr. Michael E. DeBakey, a member of our Board of Regents, praising the new system. We have already improved the system by adding NLM's AIDS and health services research databases to its searching capabilities, and more databases will be added in the future.

Genetic Medicine: Scientists at NLM's National Center for Biotechnology Information, working with colleagues at NIH and leading genome centers around the world, have put up on the World Wide Web "human gene map" that contains the computerized sequences of more than 16,000 human genes. This is roughly one-fifth of the estimated total number of genes in the human genome; as scientists unravel more they will be added to the map. Now, for the first time, scientists seeking to locate the gene for a specific disease have a 1 in 5 chance that it has already been described. Among the set of research tools provided through the human gene map are the ability to do text searches, sequence searches, and to download files containing DNA mapping information. We expect the availability of this information to researchers around the world to reduce substantially the time between identifying the gene culprit for a specific disease and developing an appropriate diagnostic test and treatment.

Equally noteworthy about the human gene map is that it will provide the public with a running update on scientific progress toward specifying the complete human genome. In addition to the tools for scientists, the map graphically displays each of the 23 pieces of chromosomes and provides consumer-friendly descriptions of many genes associated with specific disorders, for example, Alzheimer's disease, breast cancer, and cystic fibrosis. For each, there are links to pertinent foundations, voluntary organizations, and other government agencies. Some 6,000 visitors come to the site each day, ranging from high school students to commercial and academic researchers. The human gene map takes a complex subject out of the laboratory and makes it understandable in the classrooms and in the home. Such a widely accessible means of informing the public about genetics and the role of genes in disease is essential if American citizens are to benefit fully from genetic research.

The amount of molecular sequence (DNA) information coming out of our laboratories continues to increase. NLM's GenBank is equal to the task of storing this information; sophisticated computer systems developed at the Library allow the data to be analyzed, retrieved, and applied by scientists. The GenBank database is growing rapidly both in size (it contains 1,114,000 sequences, up 80 percent in one year) and in use (there are now more than 40,000 GenBank queries every day from scientists around the world).

The "Holy Grail" Information Retrieval: For more than a century, the National Library of Medicine has been viewed on as the touchstone of published knowledge in the health sciences. In the 1800s the Library "revolutionized the field" by publishing indexes to the medical literature. In the early 1960s we first used large computers to process reference data. In the 1990s the Library is making its databases widely available over the Internet. All this activity was centered on references to the literature helping scientists and health professionals locate what they really want--the article itself. Today, the World Wide Web offers the potential for providing access to complete texts of articles, and the NLM has taken the lead in developing a system that will to this. The system is called PubMed.

PubMed is an experimental system that links online MEDLINE users from an NLM-created reference and abstract to the corresponding full-text of a journal article provided directly by the publisher. The route of this transaction is the World Wide Web. Because of its role as a public biomedical information provider, NLM is uniquely positioned to create linkages from the publishers--articles not only to MEDLINE references, but also to gene sequences, protein structures, disease descriptions, and clinical practice guidelines. The National Center for Biotechnology Information, which is NLM's lead agency in this project, has demonstrated the feasibility of the concept by linking a subset of MEDLINE in the area of molecular biology to several online journals. We are talking to major medical publishers around the world and, soon, it may be possible for a scientist or doctor to call up on an office computer the full article--photographs, x-rays and all--from MEDLINE citations. We will have reached the Holy Grail.

Telemedicine: As communications technology continues to advance at a rapid pace, so too does the promise that it can play an important role in delivering health care. Last year we noted that the Library had funded several projects in telemedicine. We have made an even greater commitment this year: In the fall of 1996 the Department of Health and Human Services announced the funding by NLM of 19 new telemedicine projects. In making the announcement, Secretary Shalala said that "telemedicine offers us some of our best and most cost-effective opportunities for improving quality and access to health care." The 19 multi-year projects, located in 13 states and the District of Columbia, total some $42 million.

Among the studies to be conducted are those providing care to center city elderly (California), linking health care providers with rural patients (West Virginia, Washington, Missouri, and Alaska), linking ambulances to trauma centers (Maryland), managing patients in home settings (New York), and specialist consultation for diagnosis and treatment (Oregon, California). At about the same time these awards were being announced, the National Academy of Sciences released a study funded by the NLM on criteria for evaluating telemedicine. These criteria will be applied to the new projects, as will the recommendations from an Academy report (again funded by NLM), to be released in March 1997, on best practices for ensuring the confidentiality of electronic health data. We hope the 19 telemedicine projects will serve as models for both evaluation and confidentiality.

Outreach: We continue our efforts to bring the Library's information services to the attention of all American health professionals. The outreach program received a shot in the arm this year from the publicity attendant on the announcements concerning Internet Grateful Med, the Visible Human Project, the Human Gene Map, and the telemedicine awards. They all received considerable attention in the print and electronic media. Although usage of the Library's services continues to climb, outreach remains one of our highest priorities. We know that there are many more who could benefit from

MEDLINE and other NLM information resources.

Of inestimable help in the Library's outreach program is the National Network of Libraries of Medicine. The mission of the Network, since its formation in the 1960s, has always been to make biomedical information readily accessible to U.S. health professionals irrespective of their geographic location. The eight Regional Medical Libraries that form the backbone of the Network are supported by contracts from the NLM. To continue their successful programs, the NLM recently awarded new contracts totaling $34 million over the next five years to the eight institutions that are serving as Regional Medical Libraries for the national network. Today there are some 4,500 institutional members of the Network providing a wide range of services to American scientists, educators, practitioners, and the public. They conduct many outreach activities, including exhibits, hands-on workshops, and training. One emphasis in the new contracts is to make even greater use of the National Information Infrastructure, and especially the World Wide Web, in providing information services to health professionals.

One highly successful outreach tool is the World Wide Web site maintained by the NLM at www.nlm.nih.gov. Not only is MEDLINE accessible there (through Internet Grateful Med), but extensive information files in health services research, molecular biology information (such as the Human Gene Map), patient guidelines, image databases, and much more. These information resources, although provided over the Web, are in many cases grounded in the basic medical library services that the NLM has built up over the past century and a half.

NLM also has an Extramural Program for providing grant assistance to further the Library's objectives. Several of these are outreach-related, including support to connect medical institutions to the Internet. Other extramural programs support improving library resources within the National Network of Libraries of Medicine, research and development into health science communications, and research training in medical informatics and the related subfields that deal with biotechnology and molecular biology.