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NLM Opening Statement FY2013

DEPARTMENT OF HEALTH AND HUMAN SERVICES NATIONAL INSTITUTES OF HEALTH

Fiscal Year 2013 Budget Request

Statement for the Record
House Subcommittee on Labor-HHS-Education Appropriations

Donald A.B. Lindberg, M.D.
Director, National Library of Medicine

March 2012

Mr. Chairman and Members of the Committee:

I am pleased to present the President's budget request for the National Library of Medicine (NLM) of the National Institutes of Health (NIH).  The Fiscal Year (FY) 2013 NLM budget of $372,651,000 includes an increase of $7,608,000 over the comparable FY 2012 level of $365,043,000.  Funds have been included to allow the National Center for Biotechnology Information (NCBI) to meet the challenges of collecting, organizing, analyzing, and disseminating the deluge of data emanating from research in molecular biology and genomics.

As the world's largest biomedical library and the producer of internationally trusted electronic information services, NLM delivers trillions of bytes of scientific data and health information to millions of users every day.  Many searches that begin in Google or a mobile “app” actually retrieve information from an NLM website. After 175 years, NLM is a key link in the chain that makes biomedical research results — DNA sequences, clinical trials data, toxicology and environmental health data, published articles, and consumer health information — readily available to scientists, health professionals, and the public.  A leader in biomedical informatics and information technology, NLM also conducts and supports leading-edge research and development in electronic health records, clinical decision support, information retrieval, imaging, computational biology, telecommunications, and disaster response. 

NLM's programs and services directly support NIH's four key initiatives in basic research, technology, translational science, and research training.  The Library organizes and provides access to the published medical literature and 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 many databases 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, the Genetic Testing Registry (GTR) and the ClinVar database create a bridge between basic research and clinical applications.

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 most comprehensive clinical trials database, including registration data for more than 117,000 clinical studies with sites in 178 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 more than 5,000 completed trials of FDA-approved drugs, biological products, and devices – providing a new and growing source of evidence on efficacy and comparative effectiveness.  NLM is a primary source for results of comparative effectiveness research, providing access to evidence on best practices to improve patient safety and health care quality.  In 2011, the Library greatly expanded its collection of full-text guidelines, evidence summaries, and systematic reviews from authoritative agencies and organizations around the world.

HEALTH DATA STANDARDS AND ELECTRONIC HEALTH RECORDS

Electronic health records (EHRs) with advanced decision support capabilities and connections to relevant health information will be essential to achieving precision medicine and helping Americans manage their own health. For 40 years, NLM has supported seminal research on electronic patient records, clinical decision support, and health information exchange, including concepts and methods now reflected in EHR products and personal health record tools, such as Microsoft Health Vault. As the HHS coordinating body for clinical terminology standards, NLM works closely with the Office of the National Coordinator for Health Information Technology to facilitate adoption and “meaningful use” of EHRs.  NLM supports, develops, and disseminates several key data standards now required for U.S. health information exchange.  While actively engaged in research on Next Generation EHRs, NLM also produces tools, frequently used subsets of large terminologies, and mappings to help EHR developers and users implement health data standards right now.  NLM's MedlinePlus Connect is used in multiple EHR products to provide high quality health information relevant to a patient's specific health conditions, medications, and tests, as present in his or her EHR.

INFORMATION SERVICES FOR THE PUBLIC

This 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.  It 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 750,000 visits per day. Mobile MedlinePlus, also in both English and Spanish, reaches the large and rapidly growing mobile Internet audience. 

The NIH MedlinePlus magazine, in English and Spanish, is an outreach effort made possible with support from many parts of NIH and the Friends of the NLM. Distributed free to the public via physician offices, community health centers, libraries and other locations, the magazine reaches a readership of up to 5 million nationwide. Each issue focuses on the latest research results, clinical trials and guidelines from the 27 NIH Institutes and Centers.

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

Through its Disaster Information Management Resource Center, NLM builds on proven emergency backup and response mechanisms within the NN/LM to promote effective use of libraries and information specialists in disaster preparedness and response.  NLM 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 works with the Pan American Health Organization (PAHO) and the Latin American Network for Disaster and Health Information to promote capacity-building in disaster information management.  In addition, NLM responds to specific disasters worldwide with specialized information resources appropriate to the need, including a recently launched Disaster Information Apps and Mobile Web Sites page.

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 concurrently 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.