DEPARTMENT OF HEALTH AND HUMAN SERVICES
NATIONAL INSTITUTES OF HEALTH
Budget Request for FY 2010
Witness appearing before the
Senate Subcommittee on Labor-HHS-Education Appropriations
Donald A.B. Lindberg, M.D., Director
National Library of Medicine
May 21, 2009
Mr. Chairman and Members of the Committee:
I am pleased to present the President's Fiscal Year 2010 Budget request for the National Library of Medicine (NLM) of the National Institutes of Health (NIH). The FY 2010 budget includes $334,347,000, which is $3,576,000 more than the comparable Fiscal Year 2009 appropriation of $330,771,000.
NLM, the world's largest biomedical library and the developer of electronic information services, delivers trillions of bytes of data to millions of users daily. Every day 3.5 terabytes of data are downloaded to users. By making research results – from DNA sequences to clinical trials data to published scientific articles and consumer health information – readily available, the Library magnifies the positive impact of the NIH's investment in the creation of new knowledge. By organizing increasing amounts and types of biomedical and health information, the NLM fuels new research discoveries, informs patient care decisions, helps people exert control over their health and health care, and aids disaster preparedness and response.
The NLM is a key enabler for important Congressional, NIH, and HHS initiatives. NLM's budget request and its research projects are consistent with the President's multi-year commitment for Cancer and Autism. Current priorities include: increasing the transparency of clinical trials in ClinicalTrials.gov; enhancing public access to NIH-funded peer-reviewed manuscripts in the PubMed Central archive; making results of Genome-Wide Association Studies (GWAS) available in dbGaP to improve the understanding of genetic and environmental factors underlying human disease; supporting and distributing standard terminologies for electronic health records and clinical research data, including genetic tests, within NLM's Unified Medical Language System; conducting biomedical informatics research on health applications of information technology; and developing specialized information resources for use in emergency and disaster response.
To be useful, NLM's information services must be known and readily accessible. The Library's outreach program relies heavily on the 5,800-member National Network of Libraries of Medicine (NN/LM) and on exhibitions, events, and varied media to bring the message about NLM's free, high quality health information resources to communities across the nation. The NN/LM comprises academic health sciences libraries, hospital libraries, public libraries, and community-based organizations. They form an efficient way to make the published output of biomedicine easily accessible by scientists, health professionals, and the public and to develop partnerships with community organizations and underserved populations.
SCIENTIFIC INFORMATION RESOURCES
The NLM's National Center for Biotechnology Information (NCBI) meets the challenge of collecting, organizing, storing, analyzing, and disseminating scientific data by designing, developing, and distributing the tools, databases and technologies that are enabling the genetic discoveries of the 21st century. Celebrating twenty years since its enactment, the Center is at the hub of international interchange of molecular biology and genomic information, with Web sites accessed several million times a day.
In addition to the widely known GenBank and PubMed/MEDLINE databases, the NCBI provides a wide array of genomic resources and is a valued collaborator throughout the NIH. The recent discovery of a novel H1N1 influenza virus highlights the value of the specialized Virus Resource that NCBI developed with the NIAID. It links vaccine researchers to genomic data about the influenza virus. The PubChem repository fills a critical need in the Molecular Libraries Roadmap Initiative, with information on more than 40 million "small molecules" that are crucial in drug development. The dbGaP database, which links genotype data with phenotype information from clinical research studies to support identification of genetic factors that influence health, is the public repository for the trans-NIH GWAS project. NIH's mandatory Public Access Policy ensures scientific articles written by NIH-funded authors are deposited in PubMed Central and linked to other scientific information.
The Lister Hill National Center for Biomedical Communications leads research to create and improve biomedical communications systems, technologies, and networks. The Center recently completed a major expansion of ClinicalTrials.gov, in response to the Congressional mandate. The system now maintains a registry of clinical trials involving FDA-regulated drugs, biologics, and devices and starting last September, began collecting summary results of trials of FDA-approved products. ClinicalTrials.gov currently contains data on more than 70,000 trials in 166 countries and is searched by more than 500,000 people every month.
The NLM's two research centers collaborate on improving standards for genetic and genomic testing. The NCBI provides a database of reference values to assist in quality control of genomic tests. The Lister Hill Center is helping to expand the Logical Observation Identifiers Names Codes (LOINC) standard to cover genetic and newborn screening tests already in routine clinical and public health use.
Electronic health records with advanced decision support capabilities - and connections to relevant health information - will be essential to achieving personalized medicine and will also help people manage their own health. NLM supported much of the seminal research work on electronic records, clinical decision support and health information exchange. NLM is the HHS coordinating body for clinical terminology standards and supports development and dissemination of key standards for U.S. health information exchange. The Lister Hill Center is actively engaged in research on Next Generation electronic health records to facilitate patient-centered care, clinical research, and public health. This work has already resulted in tools that are helping system developers, including some at the Centers for Medicare and Medicaid Services, to incorporate the use of standards into health information systems.
INFORMATION SERVICES FOR THE PUBLIC
In addition to providing researchers and health care providers with access to scientific information, the NLM also serves the public - from elementary school children to senior citizens. The Library's main consumer health portal is MedlinePlus, available in both English and Spanish. In FY 2008, there were more than 750 million MedlinePlus pages viewed by more than 132 million unique visitors from 229 countries. In addition to more than 725 "health topics," MedlinePlus has interactive tutorials for persons with low literacy, medical dictionaries, a medical encyclopedia, directories of hospitals and providers, surgical videos and links to the scientific literature. A "Go Local" feature links users to information about services in their communities. Today, there is Go Local coverage for approximately 44 percent of the U.S. population and expansion is an important goal for the Library in FY 2010.
In 2009, the NLM celebrated its second year of producing the NIH MedlinePlus magazine, an outreach effort made possible with NIH and Friends of the NLM support. The free magazine is widely distributed to the public via physician offices, libraries, and other locations, with a readership of up to 5 million nationwide. A Spanish/English version, NIH MedlinePlus Salud (the Spanish word for health), was launched in January 2009 to address the specific health needs of the growing Hispanic population.
NLM also produces an array of specialized consumer health Web resources. Genetics Home Reference provides understandable information about genetic conditions and related genes or chromosomes. The Household Products Database provides easy-to-understand data on potential health effects of more than 2,000 ingredients contained in more than 8,000 common household products. The Dietary Supplements Labels Database has information from labels of over 3,000 brands of dietary supplements, with links to authoritative sources of information.
ENSURING ACCESS TO INFORMATION IN TIMES OF DISASTER
NLM is committed to ensuring uninterrupted access to critical information services in the event of disaster or emergency. NLM's new Disaster Information Management Research Center is building on proven emergency backup and response mechanisms within the NN/LM to promote effective use of libraries and specially trained librarians – disaster information specialists – in disaster management efforts. The Center also collaborates with the Navy National Medical Center, Suburban Hospital Healthcare System, and NIH Clinical Center in the Bethesda Hospital Emergency Preparedness Partnership. The Partnership will provide hospital surge capacity for the National Capitol Area and create a surge model for use across the Nation. Recent studies found such capabilities lacking in major metropolitan areas. NLM coordinates R&D for this model and investigates new methods for sharing health information for disaster preparedness and response.
NLM also develops advanced information services and tools to assist emergency responders when disaster strikes. NLM's TOXNET, a cluster of databases covering toxicology, hazardous chemicals, and toxic releases, provides a foundation for services to first responders, such as WISER (Wireless Information System for Emergency Responders) and CHEMM (Chemical Hazard Event Medical Management). CHEMM builds on the Library's successful collaboration with the HHS Office of Public Health Preparedness, NCI, and CDC to develop the Radiation Event Medical Management (REMM) system. NLM is also developing a tool for identification of Post Traumatic Stress Disorder and mild Traumatic Brain Injury.
In summary, the NLM is well positioned to contribute to the nation's health—by making increasing amounts of scientific data available to researchers and health practitioners, by improving the nation's health care information infrastructure, by providing the public with access to authoritative information to maintain their personal health, and by enabling health sciences libraries to make substantial contributions to disaster information management. All of these activities will depend on a strong and diverse workforce for biomedical informatics research, systems development, and innovative service delivery. To that end, the NLM will continue its longstanding support for post-graduate education and training of informatics researchers and health science librarians.
Donald A.B. Lindberg M.D.
Director, National Library of Medicine
Donald A.B. Lindberg, M.D., a scientist who has pioneered applying computer technology to health care beginning in 1960 at the University of Missouri, in 1984 was appointed Director of the National Library of Medicine, the world's largest biomedical library. From 1992-1995, he served as the Director of the President's Initiative on High Performance Computing and Communications (HPCC). In 1996 he was named by the HHS Secretary to be the U.S. Coordinator for the G-7 Global Health Applications Project.
In addition to an eminent career in pathology, Dr. Lindberg has made notable contributions to information and computer activities in medical diagnosis, artificial intelligence, and educational programs. Before his appointment as NLM Director, he was Professor of Information Science and Professor of Pathology at the University of Missouri-Columbia.
Dr. Lindberg was elected the first President of the American Medical Informatics Association (AMIA). As the country's senior statesman for medicine and computers, he has been called upon to serve on many boards including the Computer Science and Engineering Board of the National Academy of Sciences, the National Board of Medical Examiners, and the Council of the Institute of Medicine of the National Academy of Sciences.
Dr. Lindberg is the author of three books: The Computer and Medical Care, Computers in Life Science Research, and The Growth of Medical Information Systems in the United States; numerous book chapters; and more than 200 articles and reports. He has received awards from many professional organizations, including the Presidential Senior Executive Rank Award, the American Medical Association's Outstanding Member of the Executive Branch, and the U.S. Surgeons General's Medallions.