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NLM Director Testifies on FY 2001 Budget

DEPARTMENT OF HEALTH AND HUMAN SERVICES

Statement by Donald A. B. Lindberg, M.D.
Director, National Library of Medicine
on Fiscal Year 2001 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 non-AIDS budget for the National Library of Medicine for FY 2001, a sum of $224,942,000, which reflects an increase of $14,806,000 over the comparable FY 2000 appropriation. Including the estimated allocation for AIDS, total support requested for NLM is $230,135,000, an increase of $16,067,000 over the appropriation for FY 2000. Funds for the NLM's efforts in AIDS research are included within the Office of AIDS Research budget request.

HEALTH INFORMATION FOR THE PUBLIC

In the best tradition of American enterprise, NLM has within a few short years re-engineered its information services to benefit directly both health professionals and the public. The public has always been the ultimate beneficiary of NLM's services. But today's consumer now has the same access as doctors and scientists to the Library's immense databanks. NLM has also created new services aimed directly at the general public that are proving popular with Web users. These changes, encouraged by this Committee and supported by Congress, have been endorsed by NLM's Board of Regents.

The NLM has a two-step strategy to maximize the utility of its services. The first is to respond to the needs of the Web-using public. It is estimated that 40 to 50 percent of Americans are connected to the Internet, and health information is a popular topic for searching. In three years the Library has seen the number of searches on its MEDLINE database rise from 7 million searches a year to 250 million. The Library estimates that 30 percent are done by the members of the public for themselves and their families. That a database of 10 million references and abstracts to medical journal articles would prove to be so popular is remarkable and demonstrates an eagerness for authoritative health information by the public.

The Library has created for consumers a new service, MEDLINEplus, to complement its databases of scientific literature. MEDLINEplus has grown rapidly in little more than a year, and provides links to information on 350 diseases and medical conditions. This information, reviewed and selected by highly trained medical librarians, originates from such trusted sources as the Institutes of NIH and professional societies. NLM constantly scans these and other organizations for up-to-date information and the links are checked daily. MEDLINEplus contains a feature unique in the world of Web-based information for the public: carefully pre-formulated searches of the MEDLINE database that will return references and abstracts deemed especially useful for the average consumer.

A new service, ClinicalTrials.gov, was introduced by NLM on behalf of NIH in February 2000. This database, accessible through MEDLINEplus, contains vital information about thousands of clinical trials sponsored by the NIH and other Federal agencies. Now patients, families, and members of the public can find out about cutting-edge research being conducted around the U.S. and whether they are eligible to join a study. ClinicalTrials.gov contains a statement of purpose for each clinical research study, together with the recruiting status, the criteria for patient participation in the trial, the location of the trial, and specific contact information. The database will be expanded to include clinical trials sponsored by private industry and in other countries.

Not all Americans, however, can search the Internet. Thus, NLM's second strategy is to improve access for this group by encouraging medical libraries to work with local public libraries and other community organizations. In 1999 NLM completed a pilot project with public libraries in nine states and the District of Columbia. The purpose was to evaluate whether these libraries, using the Internet, could help meet the needs of the public for good health information. The project revealed that MEDLINEplus is an excellent place for consumers to begin their search and that public librarians need training in answering health reference questions and in finding and evaluating health information on the Web. Building on what we learned in this project, the NLM made awards in February 2000 to fund 49 electronic health information projects in 34 states that will increase Internet access in many settings, from middle schools serving low income and educationally underserved students to shopping malls and senior centers. These imaginative and well-targeted projects will stimulate medical libraries, local public libraries, and other organizations to work together to provide electronic health information services for all citizens in a community. Crucial in this effort is the Regional Medical Libraries and members of the National Network of Libraries of Medicine.

HEALTH DISPARITIES

The NLM has in place a number of programs that in recent years have been directed toward remedying the disparity in health opportunities experienced by segments of the American population. One of these programs deals with toxic waste sites and other environmental and occupational hazards that are much more likely to occur near homes in poor neighborhoods than where affluent Americans live. The Library has a program to train health professionals, community leaders, and others in minority neighborhoods to use the NLM's databases of information about hazardous waste information. The Library provides minority schools with state-of-the-art equipment, software, and free access to computerized information sources, including NLM's own toxicology and environmental health information databases. Other Federal agencies have joined with NLM and the project has grown from 9 participating minority institutions to more than 60.

Similar to the program for toxicology and environmental health, the Library has been working with institutions that serve minority populations to encourage the use of NLM information services relating to HIV/AIDS. These include the databases AIDSLINE (references and abstracts), AIDSTRIALS (clinical trials), AIDSDRUGS (drugs being tested), and DIRLINE (organizations that provide health information to the public). The NLM has in place a program to train health professionals, community organizers, information professionals, and patient advocates in the use of these resources. Requests for this training have been strong and sustained, and NLM has responded to the extent its resources permit. In addition to the programs mentioned above, NLM grants and contracts have been targeted to support health information programs for African Americans, Latinos, and Native American populations in the south; rural hospitals in the Midwest; Native Americans in Alaska and the Pacific Northwest; African American and Latino populations in the Pacific Southwest; and Puerto Rico. To illustrate, telemedicine in rural Alaska is being tested as a strategy for controlling costs and for raising the quality of health care for a minority population that is scattered across a vast area.

The NLM is a key participant in the Multilateral Initiative on Malaria Research effort in Sub-Saharan Africa. Scientists in many developing countries are unable to communicate easily with other scientists, search biomedical databases, or collaborate with colleagues in industrialized countries. This results in poor coordination and monitoring of research, redundancy of effort, and a growing disparity in research productivity. The Library is supporting the implementation of high end communications hardware and software in remote malaria research sites in Mali, Kenya, Cameroon, Ghana, and Tanzania. Since Internet connections can effectively carry voice, data, and video image transmissions, the Library is helping to bring them to scientists in those countries. The Ghana sites, for example, are engaged in malaria vaccine development and testing readiness.

MEDICAL INFORMATICS

A recently released report recommends that the NIH invest heavily in computer and information technology so as to be able to manage data and model biological processes. It also observes that there is an acute need for training specialists competent in computational biology. This recommendation falls within the scope of the NLM's medical informatics training program under which the Library supports 12 programs at U.S. universities to train experts to carry out research in general informatics and in the genome-related specialty of bioinformatics. NLM plans to augment some of these training programs with additional resources so that they can make use of the advantages they already enjoy: experienced faculty, curricula, sanctioned university status, and ready access to potential candidates. NLM envisions expanding the program beyond 12 centers with the addition of training awards to new institutions.

To ensure that the Internet will continue to support the health sciences, the NLM is a strong supporter of the Next Generation Internet (NGI), a partnership of industry, academia, and government agencies that seeks to provide affordable, secure information delivery at rates thousands of times faster than today. Advanced medical imaging, for example, requires more bandwidth than is currently available. Other applications require a guaranteed level of service (for example no data loss, or assured privacy protection) that today's Internet cannot provide. To help the health sciences prepare to use the capabilities the next few years will bring, the Library is supporting the development of innovative medical test-bed projects that demonstrate the application and use of the capabilities of the Next Generation Internet. Spread out over three phases, the support includes a variety of telemedicine-related projects, advanced medical imaging, and patient-controlled personal medical records systems. In the last phase there will be a scale-up of especially promising projects to regional or national level.

The Visible Human Project is an example of a program that requires both advanced computing techniques and the capability of the Next Generation Internet. The two very large datasets of anatomical data represented by the Visible Human Male and Female are being used (without charge) by 1,240 licensees in 41 countries, and at four mirror sites in Asia and Europe. In addition to the varied uses to which these licensees are applying the data (for example, recyclable cadavers, virtual colonoscopies, and brain surgery rehearsal), the Library is seeking to create a public software "toolkit" that will allow anyone to use the data to "create" any anatomical object. A collaborative project of the NLM, in partnership with several NIH Institutes and the National Science Foundation, is extending the Visible Human Project by developing an extremely detailed atlas of the head and neck.

GENETICS OF MEDICINE

As a result of the accelerating pace of research, the GenBank database of DNA sequence information maintained by NLM's National Center for Biotechnology Information is growing to gargantuan sizes. It now contains some 5 million sequences with a total of nearly 5 billion base pairs, and the NCBI Web site, where GenBank is made freely available, receives some 800,000 queries per day from 120,000 scientists and others around the world. In addition to academic institutions, major biotechnology and pharmaceutical firms are among the heaviest users of the NCBI Web site. They not only search GenBank, but use NCBI-created computational tools such as that which allows researchers to use the growing body of known 3-dimensional structures to infer approximate 3D sequence structure from similarity relationships. NCBI scientists have also collaborated with 64 colleagues from government, university, and commercial laboratories around the world to produce a new "gene map" that pinpoints the chromosomal locations of almost half of all human genes. This milestone in the Human Genome Project, available on the Internet, will expedite the discovery of human disease genes and by extension, contribute to advances in detection and treatment of illnesses.

BASIC SERVICES

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 developing 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.

The expanding NLM collection and research and development programs continue to put pressure on current NLM storage capacity. The issue of NLM space needs will be considered as NIH revises its Master Plan. In the meantime, NIH has assigned NLM space in the Natcher Building, located adjacent to the NLM Building to address the immediate needs as longer term options are developed and evaluated.

The NIH budget request includes the performance information required by the Government Performance and Results Act (GPRA) of 1993. As our performance measures mature and performance trends emerge, the GPRA data will serve as indicators to support the identification strategies and objectives to continuously improve programs across the NIH and the Department.

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