NLM Director Testifies on FY 2000 Budget
DEPARTMENT OF HEALTH AND HUMAN SERVICES
Donald A. B. Lindberg, M.D.
Director, National Library of Medicine
on Fiscal Year 2000 President's Budget Request
for the National Library of Medicine
February 25, 1999
Mr. Chairman and Members of the Committee:
I am pleased to present the President's budget request for the National Library of Medicine (NLM) for Fiscal Year 2000. The FY 2000 budget provides that NLM receive $181.4 million, an increase of $4.2 million (2.4%) over the comparable 1999 figure. Including the estimated allocation for AIDS, total support proposed for the NLM is $185.7 million, an increase of $4.3 million over the 1999 appropriation. Funds for NLM's AIDS efforts are included within the NIH Office of AIDS Research request.
HEALTH INFORMATION FOR CONSUMERS
Today's American is a more savvy "consumer" of health care than the patient of just a few decades ago. Society is awash in health information, and knowledgeable consumers can quickly find advice. The news media carry frequent stories about health and medicine; it seems as if the New England Journal of Medicine and the Journal of the American Medical Association are cited as sources for stories as often as the Associated Press. Not all health information available to the public is so well grounded. Some of the information "out there" is of suspect quality, and not everyone has access to the Internet (where much of the data resides). The National Library of Medicine sees in this situation a need and has launched an initiative to address both these problems.
When the NLM discovered that one third of the 140 million MEDLINE searches being done each year are being done by the public, for their personal health and the health of their families, the Library immediately began planning a new program to reach out directly to consumers. MedlinePlus was created as part of this effort and introduced on October 22, 1998. It provides Web users with access to reviewed, authoritative health information-from the NLM, the National Institutes of Health, other government agencies, and from selected non-government organizations. The new service provides access to extensive information to 45 diseases and conditions (cancer, diabetes, etc.) and also has links to self-help groups, NIH consumer health information, clearinghouses, dictionaries, lists of hospitals and physicians, health information in Spanish, and clinical trials.
The number of health topics is being expanded as rapidly as possible; NLM projects the 45 topics to be increased to several hundred in the coming months. One unique feature of MedlinePlus is a series of preformulated MEDLINE searches on various aspects of diseases that return up-to-date material useful to the general public. MedlinePlus is the centerpiece of a new pilot project that is helping to address the second problem identified above: the lack of Internet access by many of the public. The plan devised by the NLM is to train local public librarians to use the Internet to find health information responsive to their patrons' needs. In the pilot project, begun at the same time MedlinePlus was introduced, NLM is working with 39 representative public library systems (more than 200 libraries in all).
A new project with enormous potential for the public is the effort to create an easy-to-use database containing information about clinical trials, whether federally or privately funded, for experimental treatments for serious diseases and conditions. The database is being developed in stages, with NIH-sponsored trials as the first module. It will allow nonscientific users to understand the purpose of a clinical trial, the eligibility criteria for participating, where it is being conducted, and how to get in touch with those conducting it. The Library plans to create a central search engine that will provide a uniform interface to all clinical trials and thus simplify the task of finding information. One route of access to the clinical trials database would be via MedlinePlus.
SPECIAL TARGET AUDIENCES
Recognizing that poor neighborhoods suffer disproportionately from toxic waste sites and other environmental hazards, the NLM has a program to train health professionals, community leaders, and others in these areas to use TOXNET, NLM's set of databases with information about toxicology, environmental health, and hazardous wastes. Working through Historically Black Colleges and Universities (HBCUs), the Library provides state-of-the-art equipment, software, and free online access to computerized information sources for more than 60 institutions. As a result, online searching has been integrated into curricula, and training classes are held at the HBCUs for researchers, instructors, students, and health professionals in neighboring communities. The success of this program is encouraging us to expand the network to community centers, churches, state health organizations, and other groups that communicate directly with concerned citizens.
Another outreach initiative targeting a special audience is the "Partners in Information" program in which NLM has made awards to public health officials to help them hook up to the Internet and make it easier to access health information. Public health officials at the state and local level, as a group, have inadequate access to information services and technology. The new program allows them to get training and have access to information and advanced telecommunications so that they will be better equipped to deal with public health challenges. The program is a joint activity of the NLM and several federal and nonfederal groups, including the Centers for Disease Control and Prevention. The awards are scattered around the U.S. in rural and underserved areas and involve information services for public health officials who are addressing a variety of community health problems and special populations.
NLM's outreach activities have an international component that is also receiving special attention. The Library has always emphasized collecting and organizing the medical publications of other countries; this is reflected in the international character and usage patterns of MEDLINE and the other databases. A Long Range Planning Panel on International Programs was set up by the NLM Board of Regents and, in its final report, issued in 1998, the Panel recommended that the Library expand its involvement with other governments and with non-U.S. health science institutions. One international program, undertaken at the request of the NIH Director, is to participate in the Multilateral Initiative on Malaria by enhancing the communications and networking capabilities of African malarial researchers.
The NLM is supporting cutting-edge research that seeks to learn how the capabilities of the Next Generation Internet (NGI) can be used to improve health care, health education, and medical research. One aspect of this support is to fund pertinent studies by the National Academy of Sciences (most recently "Enhancing the Internet for Medical Applications: Technical Requirements and Implementation Strategies"). The NLM itself depends to a great extent on the Internet to deliver health information services, and it thus has a vested interest in promoting the health of the network. The NGI initiative is a partnership among industry, academia, and government agencies that seeks to provide affordable, secure information delivery at rates thousands of times faster than today. If we can transmit massive amounts of data quickly, and with accuracy and security, will this lower health costs, increase the quality of care, and safeguard patient privacy?
The NLM is supporting a number of investigations aimed at finding answers to these questions. Some are "tele-" projects: telemedicine, telepresence, teleconferencing, tele-immersion, telemammography, teleradiology, and teletrauma. Others are aimed at speeding life-saving treatment to heart attack victims. Working with the National Heart, Lung, and Blood Institute, the Library is trying to find out if the techniques of medical informatics can help ensure that known clot-dissolving agents are applied immediately after a heart attack. If successful, NLM's program would be a dramatic example of how timely information can potentially save many thousands of lives.
Several of NLM's technology-based programs have an educational focus. One new one is "Profiles in Science," a web site that allows the user to look behind the scenes of scientific discoveries at the unpublished writings, letters, photographs, and lab notes of great scientists and great scientific discoveries. The first two collections are for Oswald Theodore Avery and Nobelist Joshua Lederberg. The new web site, which brings together the best in archival practices with state-of-the-art technology, will be continually enriched with the papers of great scientists of this century. Another program with important implications for education and training is the Visible Human Project, which continues to command great interest in the scientific community and public media. The two datasets, which contain detailed, submillimeter, anatomical images of a male and female, are being used (without charge) by more than 1,000 licensees in 30 countries. Some of the educational uses to which they are being put are "surgical simulators" that let doctors rehearse delicate medical procedures on computer and "recyclable cadavers" to help medical students learn about anatomy via computer. The NLM is cooperating with three other NIH Institutes to fund jointly the development of an interactive, Internet-accessible atlas of head and neck anatomy based on the Visible Human Project data sets.
GENETICS OF MEDICINE
Eleven years ago the Congress, anticipating the virtual explosion of genomic information and the growing importance of molecular biology, created the National Center for Biotechnology Information (NCBI) as part of the NLM. By creating and maintaining immense databanks to receive and organize this information, and the sophisticated tools that allow it to be used in making further discoveries, the NCBI is making a major contribution to the Human Genome Project. Scientists in universities, research institutions, government agencies, and commercial organizations worldwide have come to depend on the NCBI as the authoritative source of molecular data and data-manipulation tools, and they submit the results of their work to the Center's highly evolved information resources so that the data will be available for use by others. One result of the accelerating pace of research is that the GenBank database of DNA sequence information is growing to gargantuan proportions. It now contains some 3 million sequences with a total of 2 billion base pairs, and the NCBI web site, where GenBank is made freely available, receives some 4.5 million "hits" per day from 100,000 scientists and others around the world. Not only do they use GenBank, but they avail themselves of sophisticated computational tools, such as the BLAST suite of programs for conducting comparative sequence analysis. Another such tool is Entrez, which links information, including the literature, sequences, structures, and taxonomy.
NCBI scientists are working closely with colleagues in other Institutes to create new capabilities in our fight against disease. One example we mentioned last year is the National Cancer Institute's Cancer Genome Anatomy Project (CGAP). This research is an effort to characterize normal, pre-cancerous, and malignant cells at the molecular level, and may lead to new therapies and diagnostic tools. NCBI scientists, working on the communication aspects of the project, are making it available on the web. Another collaborative project is with the National Institute of Allergy and Infectious Diseases to develop a web resource of genetic data related to the parasite responsible for most cases of malaria. NCBI scientists have also collaborated with colleagues in laboratories around the world to produce a new "gene map" that pinpoints the chromosomal locations of almost half of all genes. This milestone in the Human Genome Project, available to all on the World Wide Web, will greatly expedite the discovery of human disease genes and, by extension, contribute to advances in detection and treatment of common illnesses.
THE MEDICAL LITERATURE: BEDROCK OF NLM SERVICES
The advanced information products and services of the National Library of Medicine are built on the foundation stone of its unparalleled collections. They are broad (encompassing all the health sciences) and deep (from the 11th century to the present). The Library subscribes to more than 22,000 serial publications and serves as a "court of last resort" for published biomedical information in all forms. Extensive use is made of this collection: NLM responded to almost 700,000 requests for copies of articles and books in 1998, by e-mail, fax, post, and on-site patrons. The Library was able to handle this record workload with the help of a new document delivery system that uses scanning and electronic communications technology to process requests much faster, with less effort and paperwork, and with a higher quality copy being delivered to the requester. Clinical emergencies have special priority; doctors a thousand miles away have been astounded to receive a copy of an article from the NLM within a half hour. Much of the Library's progress, including this new system, has been achieved under the "System Reinvention" banner. Other examples are the access programs that make MEDLINE freely available on the World Wide Web and a new "integrated library system" that greatly improves internal processes and provides the same easy web access to book and audiovisual materials that MEDLINE users presently enjoy for the journal literature.
One of the most important factors in the widespread acceptance and use of NLM's information services is the role played by the National Network of Libraries of Medicine. The NN/LM, with its 4500 members, is organized through eight regions, each with a Regional Medical Library designated and supported by the NLM. Those institutions, together with 140 large academic health science libraries and the many hospital and other libraries in the network, provide crucial information services to scientists, health professionals, and, increasingly, the public. The public library initiative, described above, would not be possible without the help of network libraries.
The activities of the NLM are covered within the NIH-wide Annual Performance Plan required under the Government Performance and Results Act (GPRA). The FY 2000 performance goals and measures for NIH are detailed in this performance plan and are linked to both the budget and the HHS GPRA Strategic Plan which was transmitted to Congress on September 30, 1997. NIH's performance targets in the Plan are partially a function of resource levels requested in the President's Budget and could change based upon final Congressional Appropriations action. NIH looks forward to Congress's feedback on the usefulness of its Performance Plan, as well as to working with Congress on achieving the NIH goals laid out in this Plan.
I will be happy to answer any questions.