Fiscal Year 1999 President's Budget Request for the National Library of Medicine

DEPARTMENT OF HEALTH AND HUMAN SERVICES

Statement by:

Dr. Donald A.B. Lindberg

Director, National Library of Medicine

To:

House Appropriations Sub-Committee on Labor, HHS and Education

Date:

March 18, 1998

Subject:

Fiscal Year 1999 President's Budget

Request for the National Library of Medicine

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 1999. The President in his FY 1999 budget has proposed that the NLM receive $171.3 million, an increase of $13.4 million over the comparable 1998 appropriation. Including the estimated allocation for AIDS, total support proposed for the NLM is $174.7 million, an increase of $13.5 million over the 1998 appropriation. Funds for the NLM efforts in AIDS research are included within the NIH Office of AIDS Research budget request.

"Free MEDLINE"

I am proud to tell you the NLM has accomplished what I suggested to you last year when I said "it might actually be possible to offer MEDLINE without charge." This suggestion was echoed a week later in the testimony of world renowned heart surgeon Dr. Michael DeBakey [video], who chairs the NLM Board of Regents. It actually happened less than 3 months later, on June 26. Senators Arlen Specter [video] and Tom Harkin [video] provided a public forum for the announcement that the NLM would provide MEDLINE free to all users of the Internet and World Wide Web. Vice President Gore [video] did the ceremonial "first free MEDLINE search." Successfully, I might add. A new feature introduced was the ability to link a MEDLINE user who wishes to get a full article directly to the home page of a number of medical publishers, where articles may be viewed or ordered. So far, about 100 journals are linked to MEDLINE and the number continues to increase.

Today, the world's largest database of peer-reviewed medical information is being queried more than 300,000 times each day-more than a tenfold increase in less than a year. Who is doing all this MEDLINE searching? The traditional users, of course: doctors and other health professionals, librarians, scientists, and students. They are delighted with the new (and free) easy-to-use methods of access we have provided. But the more profound change is that the public- consumers, patients, parents, and other patient advocates-can now use MEDLINE to learn more about their own health and about how the results of medical research can affect it. This change has been fueled by widespread publicity of the announcement, including items in daily papers, weekly news magazines, consumer and other popular magazines, and televised reports; there were even episodes on NBC's "ER" [video] and CBS's "Chicago Hope" that hinged on a MEDLINE search! Because of all this, MEDLINE is now being used by tens of thousands of people who a year ago had never even heard of it. Although many of the articles referenced in MEDLINE are too technical for the average person to understand, I believe that there is much in MEDLINE that is pertinent and useful for consumers. I am announcing here that we have begun to add references from carefully selected health newsletters for the public published by medical schools and other government agencies. We plan to enrich MEDLINE so that it will have even more information oriented toward the public.

Outreach

In expanding the potential audience for MEDLINE we will be relying more and more on the outreach mandate. You may recall that our legislation was amended directing us to publicize our services. The tremendous recent growth in MEDLINE searching notwithstanding, we still have a long way to go before every health professional knows about MEDLINE and how it can contribute to high-quality medical care. Our services are no longer even bound by national borders, since the Internet makes MEDLINE accessible around the globe. In fact, the NLM Board of Regents recently approved the report of a 2-year study of NLM's international programs; one recommendation was that the NLM should be a flexible partner and encourage the use of electronic information resources by health professionals in other countries. I should note that some 50% of MEDLINE records are from non-U.S. journals. Another international project, begun in 1997 at the request of the NIH Director, aims to enhance the ability of African malaria researchers to communicate electronically with colleagues in Africa and around the world and to access critical biomedical information from local libraries, remote databases, and the Internet. The project is part of the African Multilateral Initiative on Malaria.

The Library is targeting outreach efforts to several audiences that we believe can use our services to great advantage. We recently conducted a "train the trainer" program to teach older citizens how the Web can be used as a source of good health information. We want to set in motion a multiplier effect that will spread to senior centers, public libraries, and nursing homes across the country. AIDS is another special emphasis area. NLM's AIDS- related databases contain information that is useful to patients, families, and care providers, and we are working with community groups, including public libraries, to reach them. We are also reaching rural and other underserved health care professionals to show them how the Library's electronic information services can reduce professional isolation and put them in touch with the latest currents in biomedicine.

The NLM's Toxicology and Environmental Health Information Program has operated for many years and is only now getting the attention it deserves. A panel of distinguished scientists assembled by the Institute of Medicine has recommended that the toxicology and environmental health databases be made much more easily accessible and widely available (such as the NLM has done with MEDLINE). Those underutilized databases contain a wealth of information that could be used by scientists, educators, and the public in dealing with pollution, chemical spills, and other threats to the environment.

The NLM's outreach activities could not be successful without the assistance of the National Network of Libraries of Medicine (NN/LM). The mission of the Network is 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. The 4,500 member institutions serve as the Nation's medical information infrastructure and provide a wide range of services, many of which are based on information resources provided by NLM. We have supplemented the contracts throughout the eight regions, to encourage innovative outreach projects, and plan to invest even more in the coming year. Closely connected to the NN/LM is NLM's Extramural Program for providing grant assistance. Several programs are outreach-related, including support to medical institutions to connect to the Internet. Other programs are for improving library resources of the NN/LM, health science communications, and research training in medical informatics.

Next Generation Internet

Usage of the Internet and World Wide Web has exploded. To ensure that the Internet will be up to handling future demand, a Next Generation Internet (NGI) initiative has been formed. This is a partnership between industry, academia, and several government science agencies, including the NLM. The NGI is a logical outgrowth of the High Performance Computing and Communications (HPCC) initiative and will provide affordable, secure information delivery at rates thousands of times faster than today and accelerate the introduction of new networking services for businesses, schools, hospitals, and homes. The NLM, which has in the past conducted a number of HPCC- related activities, plans to sponsor a variety of NGI health-care applications in such areas as advanced telemedicine, digital libraries, and distance learning. Such applications often require the nearly instantaneous transfer of many gigabits of data, for example in applications involving imaging. As important as the ability to transfer massive amounts of data - perhaps more important for health care-is the requirement for guaranteed quality of service and security of private information over the Next Generation Internet.

One of the most important aspects of the NGI in the health sciences is the use of computer and telecommunication technology for medical diagnosis and patient care- what has come to be called telemedicine. The concept encompasses everything from the use of standard telephone service to high-speed transmission of digitized signals in conjunction with computers, fiber optics, satellites, and other sophisticated peripheral equipment and software. The NLM has made a commitment to furthering telemedicine by sponsoring several dozen projects around the country, in a variety of rural and urban settings. Through these projects, now in their second year, we hope to evaluate the impact of telemedicine on cost, quality, and access to health care. Playing an important role in all these projects are two studies recently released by the National Academy of Sciences (and co-funded by NLM) on criteria for evaluating telemedicine and on best practices for ensuring the confidentiality of electronic health data. We expect the NLM-supported projects to serve as models for both evaluation and confidentiality. The NLM has just commissioned a third study by the Council that will take a hard look at the elements required if the NGI is to be of maximum service to health care and medical research. Capacity, quality, reliability, and security are some of the elements that will be evaluated; a strategy to achieve this infrastructure will be proposed.

Also intimately related to the NGI is Phase II of the Digital Libraries Initiative. The goals of the first phase were to advance fundamental research and build testbed networks for new technologies that capture, store, search, and retrieve knowledge from distributed electronic collections. Phase II, which is just under way, seeks to extend this technology to new application areas. NLM will contribute funds to this effort in order to assure that biomedical research institutions have an opportunity to compete for research grants and to develop imaginative and useful digital library applications of the NGI.

One of the most fascinating of the Library's high-tech enterprises is the Visible Human Project. This program has produced computer- generated images of two cadavers, one male and one female. NLM's relatively modest investment in the project has resulted in more than 1,000 licenses for use of the datasets by individuals and corporations in 27 countries. Thanks to the Visible Humans, doctors can practice procedures on "surgical simulators"; medical students can conduct dissection over and over using a CD-ROM called "The Recyclable Cadaver"; and non- invasive cancer screening techniques such as "virtual colonoscopy" are being developed.

Molecular Biology Information Services

Also closely connected to the NGI are the programs of NLM's National Center for Biotechnology Information (NCBI). The NCBI continues to advance the state of the art in analyzing the rapidly expanding wealth of information about our genetic makeup. NCBI has the most extensive and complete databases on DNA and protein sequence data in the world and logs over 2 million web hits a day. By all accounts it is the single most heavily used site in the world for molecular biology information. NCBI scientists collect and analyze molecular sequence information from laboratories at NIH around the world. The database, GenBank, recorded a milestone when the one billionth base was added just a few months ago-it took 18 years to collect the first one billion bases, but because of the explosive rate of growth, the second billion bases will probably be in the database just 18 months from now. NCBI has also been assembling all the data available on human genes resulting from the Human Genome Project. The NCBI's Human Gene Map now contains information on over 32,000 genes, nearly one-half of total estimated human genes. The Human Gene Map is on the web and allows everyone from a high school student to a Nobel laureate to find genetic information at his or her level of expertise. Another scientific resource the NCBI recently created is the database on the genetics of Plasmodium falciparum sequences, the organism that produces the most severe form of malaria and is responsible for most of the 2 million malaria deaths each year.

NCBI has distinguished itself as an international focus for genomic information research and is in the forefront in applying this wealth of information to the detection and diagnosis of genetic disease. In collaboration with the National Cancer Institute, NCBI has embarked on a major project to produce the 'molecular fingerprint' of cancer cells, to characterize what genetic steps occur as cells move from normal to cancerous states. The ultimate result of this research will be a powerful diagnostic tool that will provide a way to identify genes that directly cause cancer and identify cells in an early precancerous state, thereby enhancing the probability of early treatment.

Basic Library Services

Basic library services are the foundation on which is built the many advanced information products and services offered by the Library. The collection, begun in 1836, now numbers more than 5 million. Important as the collection itself are the Library's lending activities and cataloging and indexing services that make the information widely accessible through publications like the Index Medicus and databases such as MEDLINE. Several important workload indicators hit all-time highs in FY 1997: a total of 519,000 journal articles were indexed for the databases (one-third more than the previous record). There were 630,000 requests from libraries around the world and on-site patrons for materials from the NLM collection (+8 percent). The trend is for steady growth in the collections, bibliographic and other databases that derive from the collections, and information services that depend on both. Basic library services must be protected if the Nation is to continue to benefit from its investment in biomedical research.

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 1999 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' 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.

My colleagues and I will be happy to respond to any questions you may have.