DEPARTMENT OF HEALTH AND HUMAN SERVICES
NATIONAL INSTITUTES OF HEALTH
Budget Request for FY 2011
Witness appearing before the
House Subcommittee on Labor-HHS-Education Appropriations
Donald A.B. Lindberg, M.D., Director
National Library of Medicine
April 28, 2010
Mr. Chairman and Members of the Committee:
I am pleased to present the President's Fiscal Year (FY) 2011 Budget request for the National Library of Medicine (NLM) of the National Institutes of Health (NIH). The FY 2011 NIH request includes $364,802,000 for NLM, which is $14,195,000 more than the comparable FY 2010 NLM appropriation of $350,607,000.
As the world's largest biomedical library and the developer of trusted electronic information services, NLM delivers trillions of bytes of data to millions of users every day. NLM is a key link in the chain that translates biomedical research into practice, making the results of research - DNA sequences, clinical trials data, toxicology and environmental health data, published scientific articles, and consumer health information - readily available worldwide. Internationally recognized as a leader in biomedical informatics and information technology, NLM also conducts and supports a wide spectrum of 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 address all of NIH's five key themes -- from organizing and providing access to the flood of data from high throughput sequencing technology to reinvigorating the biomedical research enterprise. The Library's heavily used services and its partnership with the nation's health sciences libraries make the results of research accessible when and where they can fuel additional discoveries and support health decisions. NLM-funded informatics research underpins today's electronic health records, and the Library's support for ongoing maintenance and US-wide use of core standards is an enabler for health information exchange. NLM resources, including special tools that aid in disaster response, are used throughout the global health community. Beyond its information systems, NLM supports the research enterprise by training the next generation of informatics researchers, health IT leaders, and information specialists and reaching out to high school students to promote biomedical careers, with a special focus on minority populations.
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 at the hub of international exchange and use of molecular biology and genomic information, with Web sites accessed several million times a day. NCBI is meeting the challenge of organizing, analyzing and disseminating scientific research data with a suite of more than 40 integrated databases and software technologies that are enabling the genetic discoveries of the 21st century. The new Sequence Read Archive, which includes data from the 1000-genome project, is one of the fastest growing biological databases in history, with a growth rate of about one terabyte per month. Organization of these voluminous data is an essential step on the road to detection of important new associations between genes and disease and to translation of new knowledge into better diagnoses and treatments. The dbGaP database links genotype and phenotype information from clinical studies to support identification of 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.
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 86,000 clinical studies with sites in 172 countries. Recently, NLM developed novel and flexible mechanisms to accommodate the results and adverse events reporting requirements established by the Food and Drug Administration Amendments Act of 2007. To date, summary results are available for about 1,500 completed trials of FDA-approved products, 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 also help Americans to manage their own health. NLM supported much of the seminal research on electronic health records, clinical decision support, and health information exchange, including the development of innovative concepts and methods now used by MicroSoft Health Vault and Google Health. As the central coordinating body for clinical terminology standards within the Department of Health and Human Services, NLM works closely with the Office of the National Coordinator for Health Information Technology (ONC) to promote adoption and "meaningful use" of electronic health records (EHRs), in accordance with the health IT provisions of the American Recovery and Revitalization Act. NLM supports, develops, and disseminates key data standards that are targets for U.S, health information exchange in ONC's recently published criteria for certification of electronic health records. NLM's Lister Hill Center 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.
INFORMATION SERVICES FOR THE PUBLIC
In addition to providing researchers and health professionals with access to scientific information, NLM serves patients, families and the public. The Library's main consumer health portal is MedlinePlus, available in both English and Spanish, with selected materials in more than 40 other languages. MedlinePlus averages well over 500,000 visits per day, with visitors from more than 200 countries in FY 2009. In addition to more than 800 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. To reach the large and rapidly growing mobile Internet audience, NLM recently launched Mobile MedlinePlus, in English and Spanish, which delivers the same high quality and respected consumer health information to mobile devices.
The NIH MedlinePlus quarterly magazine, now in its third year, is an outreach effort made possible with the support of many parts of NIH and the Friends of the NLM. The free magazine contains no advertising and is widely distributed to the public via physician offices, libraries and other locations. Its readership is up to 5 million nationwide. Each magazine 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 (Spanish for "health"), was launched in January 2009, with support from the National Alliance for Hispanic Health, to address the specific health needs of the growing Hispanic population and to showcase the many Hispanic outreach efforts and 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 5,800-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
Recent earthquakes in Chile and Haiti point out the importance of rapid, organized response to natural disasters and other emergencies. NLM has a long history of providing health information during times of disaster and has developed a number of tools and advanced information services for use by emergency responders.
Through its Disaster Information Management Resource Center, NLM is building on proven emergency backup and response mechanisms within the NN/LM, to promote effective use of libraries and specially trained librarians in disaster management efforts. NLM also investigates new methods for sharing health information in emergencies as its contribution to the unique Bethesda Hospital Emergency Preparedness Partnership, a model of private-public hospital collaboration for coordinated disaster planning. NLM also partners with the Pan American Health Organization and other bodies in the Central American Network for Disaster and Health Information (CANDHI) to promote capacity-building activities in the area of disaster-related information management.
NLM moves swiftly to meet specific and unforeseen disaster needs. Within a week of the Haiti tragedy, NLM launched its Health Resources for Haiti page, with information in English and Haitian Creole. Working with libraries and American publishers, NLM made available free full-text articles from hundreds of biomedical journals and reference books for medical teams responding to the disaster. NLM also deployed a Haiti Earthquake People Locator (HEPL) system, based on work previously done for the Bethesda Partnership, to assist in reunifying family members. Relief personnel can rapidly submit photographs and information about located people via computer, cell phone, or a specialized "Found in Haiti" iPhone application developed by the NLM. HEPL searches and shares information with other person finder systems, such as those set up by Google, CNN, and the International Red Cross, to ensure that users search across the largest possible set of matches.
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 effective 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.