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DEPARTMENT OF HEALTH AND HUMAN SERVICES
NATIONAL INSTITUTES OF HEALTH

Fiscal Year 2003 Budget Request

Dr. Donald A. B. Lindberg, Director
National Library of Medicine

I am pleased to present the President's budget request for the National Library of Medicine (NLM) for Fiscal Year 2003, a sum of $315,163,000, which reflects an increase of $33,411,000 over the comparable Fiscal Year 2002 appropriation.

It is a phenomenon that has challenged the NLM and changed the way we operate: the ability to freely and instantaneously provide access via the Internet to the information we have accumulated for decades. MEDLINE, our database of more than 11 million references and abstracts to medical journal articles is now being searched 400 million times a year. MedlinePlus, our extensive information resource for the general public, is viewed 100 million times a year. This activity dwarfs previous usage of the NLM's bibliographic services, whether electronic or print. It has changed fundamentally how the Library operates: how and what it collects, how it preserves information, and how it disseminates biomedical knowledge.

The consequence of this communications revolution is most easily seen in the greatly expanded user community we serve. This community includes not only traditional audiences-health professionals, scientists, educators, students, and librarians-but now, also, for the first time, the general public. Surveys of Internet usage show that health information is one of the most cited reasons for searching the Internet, and we estimate that fully one-third of MEDLINE searching (and most of MedlinePlus usage) is by the public. We believe that the trend toward virtual ubiquity in electronic information access will accelerate and that the NLM must be able to move quickly to ensure that those who need reliable health information have access to it. The effort to double the NIH budget, which is fulfilled in the FY 2002 President's budget request, makes this a realistic goal for the Library.

An example of NLM's ability to respond rapidly to changing circumstances was its action in putting up on its Web site information about bioterrorism and biowarfare, including extensive information about anthrax and smallpox. NLM information specialists, both medical librarians and specialists in toxicology information, reviewed existing resources and quickly made reliable data available to all. In fact, in the weeks following September 11, more people looked at anthrax information on MedlinePlus than looked at cancer information. Despite the NLM's extensive involvement with computer and communications technology, the staff is ever mindful of its responsibility to maintain the integrity of the world's largest collection of medical books and journals. Increasingly, this information is in digital form, and the NLM, as a national library responsible for preserving the scholarly record of biomedicine, is working with the Library of Congress and others to develop a strategy for selecting, organizing, and ensuring permanent access to digital information. Regardless of the format in which the materials are received, ensuring their availability for future generations remains the Library's highest priority.

SERVING SCIENTISTS AND THE HEALTH PROFESSIONS

From the fledgling database first mounted in 1971, usable only by trained librarians, MEDLINE has grown into the world's largest bibliographic database of biomedical literature. Anyone with access to the World Wide Web can easily search it. Some 4,600 journals published around the world are currently indexed for MEDLINE. The Library is also converting information from the 1950s into MEDLINE form, so that valuable research information on smallpox and tuberculosis, to take just two pertinent examples, will be available to today's scientists and health professionals. The sophisticated yet easy-to-use access system for searching MEDLINE on the Web is called PubMed. Since its introduction in 1997, continual improvements have been made, and today PubMed offers a high degree of flexibility to users. For example, it now has links to half of the journals in MEDLINE, permitting access to the full text of articles referenced in the database. Where such links are not available, users may avail themselves of the PubMed feature known as "Loansome Doc" to order an article directly from a library in the National Network of Libraries of Medicine.

A new service to the scientific community is PubMedCentral. This Web-based digital archive of life sciences journal literature was created by NLM's National Center for Biotechnology Information. Publishers electronically send peer-reviewed articles to be included in PubMedCentral. A journal may deposit material as soon as it is published, or it may delay release for a specified period of time. NLM guarantees free access to the material; copyright remains with the publisher or the author. There are at present a dozen journals in PubMedCentral, with more soon to come online.

The National Center for Biotechnology Information (NCBI) designs and develops databases to store genomic sequence information and creates automated systems for managing and analyzing knowledge about molecular biology and genetics. With the release of the "working draft" of the human genome in 2001, the global research focus is turning from analysis of specific genes or gene regions to whole genomes, which refers to all of the genes found in cells and tissues. To accommodate this shift in research focus, NCBI has developed a suite of resources to support the comprehensive analysis of the human genome and is thus a key component of the NIH Human Genome Project. NCBI is responsible for all phases of the NIH GenBank database, a collection of all known DNA sequences. GenBank is growing rapidly with contributions received from scientists around the world and now contains more than 13 million sequences and is accessed by 50,000 researchers each day.

Scientists use not only the sequence data stored in GenBank, but avail themselves of the sophisticated computational tools developed by NCBI investigators, such as the BLAST suite of programs for conducting comparative sequence analysis. Entrez is NCBI's integrated database search and retrieval system. It allows users to search enormous amounts of sequence and literature information with techniques that are fast and easy to use. Using this system, one can access NCBI's nucleotide, protein, mapping, taxonomy, genome, structure, and population studies databases, as well as PubMed, the retrieval system for biomedical literature. NCBI's Map Viewer provides graphical displays of features on NCBI's assembly of human genomic sequence data as well as cytogenetic, genetic, physical, and radiation hybrid maps. The public "Human Gene Map" is another example of an important analysis tool developed by NCBI researchers. GeneMap represents an outline of the draft human genome and contains the location of more than 35,000- about half-of all human genes.

SERVING THE PUBLIC

There was an unexpected consequence of making MEDLINE freely available on the Web in 1997: what had been a scientific information resource used almost exclusively by medical librarians, scientists, and health professionals was discovered by consumers. NLM estimates that 30 percent of all MEDLINE searching is being done by the public. In an effort to arm the public with more useful information, the NLM, in 1998, introduced MedlinePlus, a source of authoritative, full-text health information from the NIH institutes and a variety of non- Federal sources.

MedlinePlus has grown tremendously in its coverage of health and its usage by the public. There were one million unique users in January 2002. The original two dozen "health topics," containing detailed consumer information on various diseases and health conditions, have been increased to more than 550. Other information available through MedlinePlus includes medical dictionaries, an extensive medical encyclopedia written in lay language with thousands of illustrations, detailed information about more than 9,000 brand name and generic prescription and over-the-counter drugs, information in Spanish, directories of health professionals and hospitals, and links to organizations and libraries that provide health information for the public. The most recent additions to MedlinePlus are illustrated interactive patient tutorials and a daily news feed from the public media on health-related topics. To be added soon is an information resource called NIHSeniorHealth, which the NLM is preparing in collaboration with the National Institute on Aging.

The 550 MedlinePlus health topics have links to a database of ongoing and planned scientific studies- ClinicalTrials.gov. This database is a registry of some 5,700 trials for both federally and privately funded trials of experimental treatments for serious or life- threatening diseases. Most of the studies are in the U.S. and Canada, but about 70 countries are represented in all. ClinicalTrials.gov includes a statement of purpose for each study, together with the recruiting status, the criteria for patient participation in the trial, the location of the trial, and specific contact information.

There are several new NLM databases of interest to the public. One is "CAM on PubMed." This allows users to limit a MEDLINE search to articles about complementary and alternative medicine (CAM). The CAM on PubMed subset currently contains a quarter million references to journal articles related to CAM research. Another new online service is a Web site aimed at the special needs of the inhabitants of the far north. "ArcticHealth," as it is called, provides access to evaluated health information from hundreds of local, state, national, and international agencies, as well as from professional societies and universities. The new site has sections devoted to chronic diseases, behavioral issues, traditional medicine, environment/pollution, and environmental justice.

OUTREACH

The National Network of Libraries of Medicine (NN/LM) continues to be the NLM's primary collaborator in outreach to the biomedical community and to the public. The NN/LM consists of 8 Regional Medical Libraries, 150 resource libraries (at medical schools and other major institutions), and 4400 libraries at hospitals, clinics, and local health institutions. In 2001 the NLM competitively awarded new 5- year contracts to eight institutions to serve as Regional Medical Libraries. The goal of the Network is to provide access to accurate and up-to-date health information for health professionals, patients, families, and the general public, irrespective of their geographic location. The NN/LM places a special emphasis on outreach to underserved populations in an effort to reduce health disparities. For example, there are programs to assist in remedying the disparity in health opportunities experienced by such segments of the American population as African Americans, Latinos, Native Americans, senior citizens, and rural populations.

One highly successful NLM outreach program has been strengthening Historically Black Colleges and Universities so that they can train people to use information resources in dealing with environmental and chemical hazards. Under this program, more than 80 minority institutions have received such training, and it was recently expanded to include a Hispanic serving college and a tribal college. NLM is using these schools as conduits to work with underserved communities in promoting high-quality Internet connectivity and the use of technology for research and education. The same NLM division that operates these programs also makes local awards to promote better information access for patients, families, and caretakers dealing with HIV/AIDS. In all these programs dealing with minority populations, NLM seeks to involve a wide variety of grass-roots organizations, from local health departments to churches, schools, and public libraries.

RESEARCH AND DEVELOPMENT

The Library remains at the cutting edge of research and development in medical informatics-the intersection of computer technology and the health sciences. It does this both through a program of grants and contracts to university- based researchers and through R and D conducted by the NLM's own scientists. The Library was a leader in the High Performance Computing and Communications initiative of the nineties and is presently working to ensure that the health sciences are prepared to take full advantage of the Next Generation Internet. NLM's Lister Hill National Center for Biomedical Communications conducts a wide range of research to improve biomedical communication and also oversees a broad-gauge telemedicine program and the Visible Human Project.

The Library has funded a variety of innovative telemedicine projects that demonstrate the application and use of the capabilities of the Next Generation Internet. "A Clinic in Every Home" is an especially promising telemedicine project with the Iowa Department of Public Health and the University of Iowa. Building on work successfully done under an existing contract with NLM, this project is providing a test-bed for medically underserved rural Iowa residents to provide them with access to high quality health care. The expectation is that using such a system will both raise the quality of health care and lower health care costs.

Applications involving the Visible Humans will also use the expanded capabilities of the Next Generation Internet. The Visible Human male and female data sets, consisting of MRI, CT, and photographic cryosection images, are huge, totaling some 50 gigabytes. The datasets are licensed to scientists at more than 1400 institutions around the world. Projects range from teaching anatomy to practicing endoscopic procedures to rehearsing surgery. One new aspect of the Visible Human evolution is the project to develop an extremely detailed atlas of the head and neck in collaboration with four NIH Institutes and the National Science Foundation. The application of cutting edge technologies in this project will allow interactive dissection of anatomic structure and "fly-through" anatomic relationships, for example, traveling down the optic nerve and viewing the ophthalmic artery and its tributaries.

NLM Extramural Programs have an important role in supporting R an D in biocommunications. One timely example is the early warning public health surveillance system developed at the University of Pittsburgh and recently demonstrated to the President. NLM's grant program also is a key supporter of NIH's "Biomedical Information Science and Technology Initiative." The Library is funding 12 training programs at universities across the nation for the express purpose of training experts to carry out research in general informatics and in the genome-related specialty of bioinformatics. The NLM has recently augmented each of the training programs with a "BISTI supplement" and has also funded two planning grants that will eventually lead to the development of what are called National Programs of Excellence in Biomedical Computing.

The NIH budget request includes the performance information required by the Government Performance and Results Act (GPRA) of 1993. Prominent in the performance data is NIH's third annual performance report which compared our FY 2001 results to the goals of our FY 2001 performance plan.