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Goal 1: Seamless, Uninterrupted Access to Expanding Collections of Biomedical Data, Medical Knowledge, and Health Information

"The digital era, far from ending the physical library, will free it to facilitate learning rather than to house shelves —and will free those who work within library spaces to do less book processing and more learning facilitation."[19]

Building and maintaining the world’s most comprehensive collection of biomedical literature is the one aspect of NLM’s mandate that John Shaw Billings, the towering 19th century figure in the Library’s history, would find most familiar. It was Dr. Billings who articulated the idea that a "national medical library" should aggressively collect and preserve the record of medicine. Today, the stream of printed books and journals being cataloged and shelved would reassure Billings, but he would no doubt be amazed by the digital publications and data that form an essential part of modern science and of NLM’s collection. The Library’s collection, in all its forms, is the bedrock on which today’s information services rest and on which future services will be built.[20]

Recommendation 1.1. Ensure adequate space and storage conditions for NLM’s current and future collections to guarantee long term access to information and efficient service delivery.

Photo of NLM Construction c. 1955 NLM Construction c. 1955

 

Water Colors of Plans for NLM Expansion Plans for NLM Expansion

Inherent in the mandate of the world’s preeminent medical library—to acquire, organize, preserve, and disseminate biomedical information—is the need for space to house its ever-expanding physical and electronic collections of biomedical information. These critical resources, many of which do not exist anywhere else in the world, continue to grow. Unfortunately, the shelves are filled, special collections are out of space, and computer rooms have no place to expand. Developing an expanded facility for the NLM is a small investment compared to the potential benefits of bringing the latest in biomedical science out of the laboratory and into the daily lives of millions to promote health and cure disease.

Despite great promises on the horizon, all of NLM’s information-handling capabilities are being jeopardized by a lack of adequate space. Present facilities predate 1987 when Congress established the National Center for Biotechnology Information (NCBI). Built to hold fewer than 650 staff, the buildings must now accommodate more than 1300 with much of the increase coming from NCBI. Physical collections are overflowing the stacks, digital collections are outgrowing data center capacity and stressing electrical power and air-conditioning systems, and space for the serious multidisciplinary collaboration that underpins 21st century biomedical science is non-existent.

Architectural plans for a new NLM building were completed in 2003. The new facility would provide the Library with needed space for the biomedical archive of last resort, research on how to make information available, the work of the NCBI in molecular genetics, and a "collaboratory" that will assist in putting together teams of experts with different backgrounds to engage in large-scale multidisciplinary science.

Recommendation 1.2. Preserve NLM’s collections in highly usable forms and contribute to comprehensive strategies for preservation of biomedical information in the U.S. and worldwide.

NLM has made significant progress in preserving its traditional physical collections through microfilming and (more recently) digitizing brittle books and journals, conservation of rare historical materials, and implementation of an onsite disaster prevention and response program. NLM should continue to use digital technology to preserve and provide permanent access to additional portions of the NLM print collection as well as its pictorial, multimedia, and archival materials.

When NLM owns both print and digital versions of the same biomedical journals, the Library should not quickly - nor unilaterally - consider abandoning its physical journal collection. NLM holds one of the world’s major archival collections. It has an obligation to work in partnership with appropriate scholars and institutions worldwide to develop prudent preservation and access plans that serve science and health well in the long term future.

Because preservation of the NLM collection is necessary, but not sufficient to ensure continuing access to the complete record of biomedical and health sciences, these plans must encompass unique and important historical materials held elsewhere. Particular attention should be paid to preserving documentary evidence of the traditional healing practices of indigenous peoples.

The great preservation challenge of the 21st century is ensuring permanent access to digital information. Perhaps counter intuitively, acquiring and preserving digital data is more complex, more difficult, and more expensive (in people, space, and materials) than acquiring and preserving paper-based materials. Licensing arrangements provide current access to electronic information without transferring an actual copy that can be preserved.

Few institutions can match NLM’s record of 40 years of successful preservation of the digital data it holds. Indexing citations created in the 1960s in the original batch Medical Literature Analysis and Retrieval System (MEDLARS) are searchable in PubMed/MEDLINE today, as well as available to other computer systems in fully tagged XML (Extensible Markup Language) format. The NLM experience with MEDLINE, GenBank, and many other databases shows that continual public access ensures that digital data are preserved in usable format.

NLM’s PubMed Central[21], recently developed by NLM’s National Center for Biotechnology Information on behalf of NIH, has led to national and international partnerships with publishers, societies, research funders, and libraries to promote and enable permanent public access to the electronic full-text of biomedical journals, including papers resulting from NIH-funded research. Thus NLM has appropriately extended its preservation plans to include information held elsewhere. The PubMed Central team led the definition of a widely adopted standard XML format for electronic articles,[22, 23] now extended to include books, and has developed an exportable version of the PubMed Central system to aid the development of similar archives in other countries. This work—and perhaps more like it—should be used by NLM as a start of efforts to assist in worldwide arrangements to guarantee the preservation of key biomedical information.

NLM must continue to work in partnership with the Library of Congress, the National Archives, other U.S. national and international government organizations, academia, publishers, and industry to develop workable long-term solutions to protect the full range of electronic materials, including scholarly publications, datasets, Web documents, interactive publications and other formats on which 21st century research, health care, and education depend. Such arrangements will almost certainly include collaboration among geographically dispersed trusted repositories. While contributing to long-term solutions, NLM should pursue immediate opportunities, including agreements with interested publishers and international peering partners for PubMed Central and other digital holdings.

Recommendation 1.3. Structure NLM’s electronic information services to promote scientific discovery and rapid retrieval of the "right" information by people and computer systems.

Over the past decade, NLM "reinvented" its data creation, retrieval, and dissemination systems to support effective Web access, efficient interaction with external computer programs and Web applications, and output in standard formats. Improving the efficiency and effectiveness of NLM’s systems is a journey - not a destination. To keep pace with the increasing flood of knowledge and data, NLM must continue to enhance the efficiency of its internal data creation and library processing systems and to provide ever more sophisticated automated assistance to the human experts who create and curate the Library’s authoritative bibliographic and scientific data.

Millions of individuals and many external computer systems now retrieve terabytes of high quality health information and scientific data from NLM databases and services every day. Users of NLM services report relatively high satisfaction, and use continues to grow dramatically.[24] But most users of NLM databases fail to take advantage of the rich variety of linkages that already exist among NLM’s related data sets and rely on a simple question and answer mode of querying, sorting through a short list of results and exiting. Many important discoveries may never be realized because of this query method. The problem will become more substantial as databases expand with new and different data types. Enhancements that improve automated assistance to facilitate discoveries are badly needed.

To address this problem, NLM should harness the combined strengths of its research and service divisions to improve its ability to lead users to the information already available in NLM resources and to provide just-in-time information delivery. Appropriate steps include development of more effective mechanisms for: retrieving across NLM’s disparate resources, displaying related content from disparate resources, providing interfaces that accommodate the varying needs of individual users and external computer systems that require access to NLM data, and measuring the impact of new features on usability, user behavior, and retrieval success. NLM should also pursue ongoing work with leading commercial information technology companies to systematically probe NLM databases via sophisticated algorithms that dynamically deliver search results aimed at individual users’ interests and requirements.

NLM should continue to conduct and support research and development in advanced information retrieval, synthesis, and display, including new ways to structure biomedical knowledge in electronic form; use of natural language processing techniques and software agents to integrate, access, and repackage information across multiple information resources; advanced database probing algorithms; and shareable software tools that aid customization for particular types of users (e.g., researchers, clinicians, and health care consumers).

Recommendation 1.4. Evaluate interactive publications as a possible means to enhance learning, comprehension, and sharing of research results.

New forms of "interactive" publications are emerging from the "multi-media" attachments[25] of some current journal articles. Despite major challenges in implementation, management, and preservation, interactive publications have the potential to enhance understanding, learning, and retention of scientific and health concepts.[26] Such publications could allow the reader (or hearer) to "point and-click" or gesture appropriately at a text passage and elicit a true multi-media response appropriate to the context. For example, the text reference to a clinical coronary angiogram might lead to a short video. Other examples might include breath and heart sounds, access to full CAT scans or MRIs in place of still illustrations, visualization of patient gait, and access to the data observations behind published summary tables and graphs. Where this supplementation is possible, one imagines a better comprehension and heightened credibility for the expert viewer, and a better learning opportunity for the less than expert viewer. These approaches might well enable more effective presentation of full results of clinical trials for both experts and the interested public.

Lister Hill Center research has developed and demonstrated a prototype system for publications with tabular data. The National Center for Biotechnology Information already is processing early examples of multimedia publications into PubMed Central, storing the multi-media and/or data attachments physically at NLM. As yet there are no generally agreed-upon standards for the format of the attached files, which complicates their management and long-term use. For those articles that are available primarily at publishers’ or contractors’ computer sites, the non-standard multi-media attachments may physically be stored in many different places around the world.

Research on enabling useful interactivity in scientific publications requires partnerships between NLM and commercial and academic journal publishers. The research agenda should address such topics as: appropriate technical formats; tool development for authoring, downloading, and viewing; thorough evaluation of the technology at various stages to ensure that the participating groups (authors, publishers, health professionals, researchers, students) benefit from this type of publication; and, after much more is learned, the development of recommended standard formats and practices.

Recommendation 1.5. Ensure continuous access to health information and effective use of libraries and librarians when disasters occur.

It is a distressing aspect of our era that society faces a variety of potential large-scale threats, both acts of nature and acts of humans. NLM has a significant track record in building information resources and networks that are resilient and valuable in the face of disasters from Bhopal, India, to the U.S. Gulf Coast.

The Library's first responsibility is to ensure that NLM critical information services remain available during emergencies and disasters - and it takes this responsibility seriously. NLM devotes a staff of six experts to computer security measures that prevent, detect, and minimize the effects of hostile attacks on the Library’s computer systems. An offsite computer facility on a different power grid with multiple Internet access providers supports uninterrupted service from NLM’s key systems. Some services are actively served by both sites, each acting as a hot standby for the other. For the warm and cold standby services, NLM cooperates with the National Network of Libraries of Medicine (NN/LM) to regularly test rerouting requests for service and assistance from one facility to another. In addition, some NLM datasets are mirrored at other sites around the world.

NLM should continue to strengthen and test its already excellent emergency response capabilities. NLM should work with the Regional Medical Libraries to establish more extensive NN/LM disaster response plans, possibly including library pairing to provide personnel and other services during emergencies. NN/LM planning should take advantage of relevant expertise and mission within HHS and military agencies, including the Uniformed Services University. In the aftermath of Hurricanes Katrina and Rita, the NN/LM was highly effective in obtaining useful information from affected communities, rerouting requests for services, and getting equipment and personnel to locations serving evacuees and temporary health care facilities. Many public libraries served as communication and social service centers for evacuees.

 
Library emerges as information hub in shattered Mississippi town
"Library cards may have been washed away by Hurricane Katrina, but it doesn’t really matter. Patrons in Pass Christian, Mississippi, are making do with a makeshift library that was set up in a 28-by-72-foot trailer in November. Although small, the temporary library has 17,000 volumes, wireless internet access, computers and laptops, group meeting space, and three full-time staff to help people find whatever they need...." 

Oakland (Calif.) Tribune, Aug. 26, 2006
 

 

Photo of Veterans Administration Hospital, Gulfport, MS after Hurricane Katrina.

Veterans Administration Hospital, Gulfport, MS after Hurricane Katrina.

Building on this experience, NLM should work with appropriate federal, state, and local agencies to ensure that libraries and librarians are included in disaster response information plans and to identify more specifically the kinds of information they should be prepared to supply. Local 211 agencies that provide directories of essential community services, health organizations and other agencies are identifying resources in their own areas.

NLM should work with relevant stakeholders to determine how this information can be organized and integrated into a national structure, analogous to the expanding MedlinePlus Go Local service that links information about locally available health services to authoritative disease, treatment, and prevention information. NLM should investigate the potential for expanding its services to encompass additional information relevant to disaster management.

Recommendation 1.6. Establish a Disaster Information Management Research Center at NLM to make a strong commitment to disaster remediation and to provide a platform for demonstrating how libraries and librarians can be part of the solution to this national problem.

NLM does not actually treat patients, investigate disease outbreaks, clean up toxic spills, or conduct clinical trials. Nonetheless, the Library’s intramural and extramural research programs have produced innovative and robust information systems and services that assist all of these activities. In recent years, NLM has conducted and supported selected research and development projects related to disaster information management, which have been similarly useful to those involved in disaster planning and management.

Work undertaken or sponsored by NLM has produced portable devices with toxic chemical information used by emergency responders after Hurricane Katrina, software tools for robust DNA identification of victims of 9/11[27] and Katrina, prototype self-healing wireless networks to restore connectivity and smart tags to track patients during triage, transportation, and treatment, and new insights into the evolution of flu viruses derived from the analysis of genomic data which suggest more effective strategies for vaccine development.

There is ample evidence of the enormous communication and information dissemination problems that arise in large scale disasters. The area is ripe for additional research that builds on NLM’s existing strengths and research portfolio. To complement and support the activities of the federal, state, and local agencies responsible for disaster planning and response, NLM should formally expand its research and development agenda in this arena and establish a Disaster Information Management Research Center within the Library. This new Center should:

  • Maintain close collaboration with appropriate federal agencies and initiatives that aim at disaster prevention and remediation.
  • Alert staff at NLM, NIH, and HHS to progress, experiments, and failures in this field, with special focus on information and communication systems.
  • Operate across NLM Divisions so that all potential contributions to disaster remediation, including outreach and training, are coordinated and enhanced.
  • Identify critical research and development opportunities, and initiate and/or collaborate in these.