NLM Opening Statement FY2012
DEPARTMENT OF HEALTH AND HUMAN SERVICES
NATIONAL INSTITUTES OF HEALTH
Fiscal Year 2012 Budget Request
Witness appearing before the
Senate Subcommittee on Labor-HHS-Education Appropriations
Donald A.B. Lindberg, M.D., Director
National Library of Medicine
May 11, 2011
Mr. Chairman and Members of the Committee:
I am pleased to present the President’s Fiscal Year (FY) 2012 Budget request for the National Library of Medicine (NLM) of the National Institutes of Health (NIH). The FY 2012 NIH request includes $387,153,000 for NLM, which is $24,420,000 more than the comparable FY 2011 NLM appropriation of $362,733,000.
As the world’s largest biomedical library and the producer of internationally trusted electronic information services, NLM delivers trillions of bytes of data to millions of users every day. Many who begin a search in Google, another search engine, or a mobile “app” actually receive health information from an NLM website. Now in its 175th year, NLM is a key link in the chain that makes the results of biomedical research — DNA sequences, clinical trials data, toxicology and environmental health data, published scientific articles, and consumer health information — readily available to scientists, health professionals, and the public worldwide. A leader in biomedical informatics and information technology, NLM also conducts and supports leading-edge informatics research and development in electronic health records, clinical decision support, information retrieval, advanced imaging, computational biology, telecommunications, and disaster response.
NLM’s programs and services directly support NIH’s four key initiatives. The Library organizes and provides access to massive amounts of scientific data from high throughput sequencing; assembles data about small molecules to support research and therapeutic discovery; provides the world’s largest clinical trials registry and results database; and is the definitive source of published evidence for health care decisions. Research supported or conducted by NLM underpins today’s electronic health record systems. The Library has been the principal funder of university-based informatics research training for 40 years, supporting the development of today’s leaders in informatics research and health information technology. NLM’s databases and its partnership with the nation’s health sciences libraries deliver research results wherever they can fuel discovery and support health decision-making.
RESEARCH INFORMATION RESOURCES
NLM’s PubMed/MEDLINE database is the world’s gateway to research results published in the biomedical literature, linking to full-text articles in PubMed Central, including those deposited under the NIH Public Access Policy, and on publishers’ websites, as well as connecting to vast collections of scientific data. Through its National Center for Biotechnology Information (NCBI), NLM is a hub for the international exchange and use of molecular biology and genomic information, with databases accessed by more than two million users daily. NCBI meets the challenge of organizing, analyzing, and disseminating scientific research data with more than 40 integrated databases and analysis tools that enable genomic discoveries in the 21st century. These databases are fundamental to the identification of important associations between genes and disease and to the translation of new knowledge into better diagnoses and treatments. Resources such as dbGAP and the upcoming Genetic Testing Registry (GTR) create a bridge between basic research and clinical applications. dbGaP links genotype and phenotype information from clinical studies to identify genetic factors that influence health and serves as the public repository for data from genome wide association studies (GWAS) supported by NIH and other research funders. The GTR will be a central source for health care providers and patients to find detailed information about genetic tests and the laboratories that offer them.
NLM also stands at the center of international exchange of data about clinical research studies. NLM’s Lister Hill National Center for Biomedical Communications builds ClinicalTrials.gov, the world’s largest clinical trials database, including registration data for more than 106,000 clinical studies with sites in 174 countries. ClinicalTrials.gov has novel and flexible mechanisms that enable submission of summary results data for clinical trials subject to the Food and Drug Administration Amendments Act of 2007. To date, summary results are available for about 3,400 completed trials of FDA-approved drugs, biological products, and devices – providing a new and growing source of evidence on efficacy and comparative effectiveness.
HEALTH DATA STANDARDS AND ELECTRONIC HEALTH RECORDS
Electronic health records with advanced decision-support capabilities and connections to relevant health information will be essential to achieving personalized medicine and will help Americans to manage their own health. For 40 years, NLM has supported seminal research on electronic health records, clinical decision support, and health information exchange, including concepts and methods now used by MicroSoft Health Vault and Google Health. As the central coordinating body for clinical terminology standards within HHS, NLM works closely with the Office of the National Coordinator for Health Information Technology (ONC) to facilitate adoption and “meaningful use” of electronic health records (EHRs). NLM supports, develops, and disseminates key data standards for U.S. health information exchange in ONC’s criteria for certification of electronic health records. NLM is actively engaged in research on Next Generation EHRs, while also developing tools and frequently used subsets of large terminologies to help EHR developers and users implement health data standards right now. Most recently, NLM released MedlinePlus Connect, which allows application developers to establish direct links from a patient’s view of his or her EHR to high quality health information relevant to that person’s specific health conditions, medications, and (coming soon) recent tests.
INFORMATION SERVICES FOR THE PUBLIC
This new EHR connection builds upon NLM’s extensive information services for patients, families and the public. The Library’s MedlinePlus website provides integrated access to high quality consumer health information produced by all NIH components and HHS agencies, other federal departments, and authoritative private organizations and serves as a gateway to specialized NLM information sources for consumers, such as the Genetic Home Reference and the Household Products database. Available in English and Spanish, with selected information in 40 other languages, MedlinePlus averages well over 600,000 visits per day. Covering nearly 900 health topics, MedlinePlus has interactive tutorials for persons with low literacy, an illustrated medical encyclopedia, surgical videos and links to the scientific literature in PubMed. Mobile MedlinePlus, also in both English and Spanish, reaches the large and rapidly growing mobile Internet audience.
The NIH MedlinePlus quarterly magazine is an outreach effort made possible with support from many parts of NIH and the Friends of the NLM. Like MedlinePlus itself, the magazine is free and contains no advertising. It is distributed to the public via physician offices, community health centers, libraries and other locations and has a readership of up to 5 million nationwide. Each issue focuses on the latest research results, clinical trials and new or updated guidelines from the 27 NIH Institutes and Centers. A Spanish/English version, NIH MedlinePlus Salud, launched with support from the National Alliance for Hispanic Health and the National Hispanic Medical Association, addresses the specific health needs of the growing Hispanic population and showcases the many Hispanic outreach efforts and relevant research results funded by the NIH.
To be of greatest use to the widest audience, NLM’s information services must be known and readily accessible. The Library’s outreach program, with a special emphasis on reaching underserved populations, relies heavily on the more than 6,300-member National Network of Libraries of Medicine (NN/LM). The NN/LM is a network of academic health sciences libraries, hospital libraries, public libraries and community-based organizations working to bring the message about NLM’s free, high-quality health information resources to communities across the nation.
DISASTER INFORMATION MANAGEMENT
Events of the past year, such as the Deepwater Horizon Oil Spill and the earthquake, tsunami, and radiation event in Japan, demonstrated yet again the importance of rapid, organized response to natural disasters and other emergencies. NLM has a long history of providing health information to prepare for, respond to, and recover from disasters and has tools and advanced information services designed for use by emergency planners, responders and managers. Through its Disaster Information Management Resource Center, NLM builds on proven emergency backup and response mechanisms within the National Network of Libraries of Medicine to promote effective use of libraries and disaster information specialists in disaster preparedness and response. NLM also conducts research on new methods for sharing health information in emergencies as its contribution to the Bethesda Hospital Emergency Preparedness Partnership, a model of private-public hospital collaboration for coordinated disaster planning. NLM partners with the Pan American Health Organization (PAHO) and other bodies in the Latin American Network for Disaster and Health Information to promote capacity-building in the area of disaster information management.
Within two days of the Gulf Oil Spill, NLM launched a web page focused on the potential effects of oil on human health, which quickly became a highly regarded resource for evidence-based information by federal, state, and local agencies and communities. NLM continued to support information needs in Haiti, including onsite assistance to PAHO in setting up a system for collecting information from cholera treatment centers. The Radiation Emergency Medical Management (REMM) tool, previously developed by NLM, the HHS Office of the Assistant Secretary for Preparedness and Response, CDC and NCI, was deployed in Japan, via the web and on mobile devices, to assist with assessing and managing the health effects of radiation. NLM also activated the Emergency Access Initiative, a partnership with publishers and medical libraries which provides free temporary access to key electronic medical journals and books when disasters interrupt regular health information services, and provided practical advice to Japanese libraries and archives on rescuing water-damaged books and documents.
In summary, NLM’s information services and research programs serve the nation and the world by supporting scientific discovery, clinical research, education, health care delivery, public health response, and the empowerment of people to improve personal health. The Library is committed to the innovative use of computing and communications to enhance public access to the results of biomedical research.
Donald A.B. Lindberg M.D.
Director, National Library of Medicine
Donald A.B. Lindberg, M.D., a scientist who pioneered applying computer technology to health care beginning in 1960, was appointed Director of the National Library of Medicine in 1984. From 1992-1995, he also 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 many awards, including the Presidential Senior Executive Rank Award, two U.S. Surgeon General's medallions, the American Medical Association's Nathan Davis Award for Outstanding Member of the Executive Branch.