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Charting a Course for the 21st Century – NLM's Long Range Plan 2006-2016

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Goal 2: Trusted Information Services that Promote Health Literacy, Improve Health Outcomes, and Reduce Health Disparities Worldwide

"Health literacy is the degree to which individuals can obtain, process, and understand the basic health information and services they need to make appropriate health decisions. But health literacy goes beyond the individual. It also depends upon the skills, preferences, and expectations of health information and care providers..."[28]

Contributing to improved health literacy is a foundational goal for the NLM. For the Nation it is both good social policy and sound fiscal policy to increase health access and improve outcomes.[29] As stated in the Board of Regents Policy on Consumer Health, NLM’s primary role is "to ensure that all people in the U.S. have a known, accessible, understandable, and affordable source of current, authoritative health information." Ready access to information will not ensure understanding yet alone behavior modification, but it is often a prerequisite, and should continue to be a primary objective of NLM outreach programs. Furtherance of user understanding presents a greater challenge, and will require imaginative efforts to use user feedback, evaluation, and cognitive science principles to inform system development. Services intended for use by minority populations must also employ culturally appropriate design elements that invite and reinforce effective use.

Smudging ceremony NLM Director Lindberg at Smudging Ceremony opening the "Native American Concepts of Health and Disease" Consultation, December 2006, Santa Fe, New Mexico, with Mr. George Horse Capture, Curator Emeritus, National Museum of the American Indian.

NLM's free, high quality consumer information services are heavily used by members of the public and by clinicians as aids to patient education, but they reach only some of their intended users. At a time when the amount of doctor-patient "face time" for discussing and explaining health conditions is short and there is intensified emphasis on self-informed patients and healthy lifestyles as keys to improving health and reducing costs, the Library must continue to strengthen its efforts to promote awareness of and ability to use electronic information sources among all segments of the population. To this end, NLM must strive to provide information in forms that can help increase understanding, reduce health disparities, and promote health literacy.

 

Recommendation 2.1. Advance new outreach programs by NLM and NN/LM for underserved populations at home and abroad; work to reduce health disparities experienced by minority populations; share and actively promote lessons learned.

NLM’s core mission includes a vigorous outreach program to help assure that its users, including researchers, health professionals, and the lay public, are aware of and make effective use of health information available from NLM. NLM’s active outreach program began when the Medical Library Assistance Act (MLAA) of 1965 mandated the formation of the Regional Medical Library (RML) Network to strengthen medical information service across the country. In 1989, encouraged by the Congress, the NLM Board of Regents issued a specific Long Range Plan Report on Outreach[30], known as the "DeBakey" report after Dr. Michael E. DeBakey who chaired the Planning Panel and had also been influential in the passage of MLAA. The 1989 Outreach Plan recommended a new name and an expanded outreach role for what is now called the National Network of Libraries of Medicine (NN/LM). In FY 1990, funding increases from the Congressional Appropriations Sub-Committee chaired by Mr. William Natcher enabled hundreds of locally-directed outreach projects to reach underserved health care professionals nationwide.

Beginning with emphases on physicians not directly affiliated with an institution having a medical library, and on the HIV/AIDS community, NLM and NN/LM outreach efforts promoted access to the newly emerging Internet and the electronic resources that increasingly became NLM’s most efficient mode of dissemination.[31]

Woman baking bread. December 2006 NLM visit to Jemez Indian Pueblo, New Mexico, Traditional Bread Making.

The elimination of charges for MEDLINE in 1997 (due to the switch from commercial telecommunications networks to the Internet) and the development of MedlinePlus and other NLM services directed toward the general public enabled the expansion of outreach to public health professionals (via the Partners in Information Access for the Public Health Workforce), public libraries, and a growing range of community-based organizations serving minority and underserved populations.

Over the past 15 years, numerous projects have addressed infrastructure improvements in minority and rural communities and academic institutions (e.g., Historically Black Colleges and Universities and Tribal Colleges); training minority health professionals, librarians and other information professionals, and community members to use health information resources (e.g., Promotoras de Salud and Hispanic student peer tutors[32, 33]); outreach partnerships with community-based and professional organizations (e.g., through "listening circles" and other consultations with American Indians, Alaska Natives and Native Hawaiians); and the development of culturally sensitive information (e.g., special population Web sites for Native Americans and Pacific Islanders).


 
"By many measures, America has an exceptional health care system. Tremendous advances have made the U.S. health system the most technologically advanced in the world. Yet that system is in trouble. Basic quality care is beyond the reach of far too many Americans. As the population has become increasingly diverse, glaring disparities in the quality of care, especially for racial and ethnic minorities, have led to thousands of premature deaths each year and incalculable hours of lost productivity, pain, and suffering."[34]
 

Public libraries, schools, public health departments, and a range of community based organizations are natural allies in the campaign to improve health literacy and eliminate health disparities. NLM and the NN/LM must continue to work in partnership with all of these groups to develop new models and strategies for promoting sustainable access to, and use of, health information in minority and underserved communities. Expansion of the NN/LM to include new members such as community-based organizations should be attempted.

Children in library's comuter room. July 2006 NLM visit to Miloli'i Village Big Island, Hawaii Computer Room in Village Library.

Experience gleaned from outreach demonstration projects must be evaluated in context and disseminated widely in the interest of furthering participatory research that strengthens community-based organizations, and fosters productive partnerships with libraries and health professionals.[35] NLM should consider hosting a Web site as a primary resource center and point of entry for locating health information literacy tools and materials, perhaps employing collaboration tools such as Wikis and blogs to provide dynamic reports of outreach outcomes and lessons learned. An effective practices database, modeled upon those produced for the Corporation for National Service, could reach the broader outreach community and benefit from their input.

Recommendation 2.2. Work selectively in developing countries that represent special outreach opportunities, such as improving access to electronic information resources, enhancing local journal publications of high quality, and developing a trained librarian and IT workforce.

At its most fundamental level, global health is America’s business both on humanitarian grounds and on national security grounds. The dire health conditions in some developing nations are part of the heart-wrenching scenes of distress broadcast via TV, cable, and the Internet around the globe. Diseases in one part of the world can quickly spread. Collaboration with partners in developing regions is essential to help establish means for accessing and disseminating disease surveillance data that may be used to identify and contain new outbreaks that also become a threat to the American people. This outreach should be pursued in concert with a new NLM research agenda in disaster information management, coupled with efforts to strengthen national and local public health systems.

Men installing a satellite dish. Installing the satellite dish for the Multilateral Initiative on Malaria communication network in Gabon.

NLM has been a significant contributor in international activities for at least half a century,[36] in part through the International MEDLARS Centers and through participation in international conferences on medical librarianship and medical informatics. In recent years NLM has supported intensive capacity-building projects in selected developing countries. In partnership with the National Institute of Allergy and Infectious Diseases and the Fogarty International Center at NIH, the Centers for Disease Control and Prevention and numerous research agencies in the US and abroad, NLM developed and implemented a communications model for the Multilateral Initiative on Malaria that provides affordable and reliable satellite access to the Internet and electronic information resources in malaria research laboratories in 19 African countries.[37] Subsequent partnerships were established to improve the quality of African medical journals, leading ultimately to their being indexed in MEDLINE; to train IT personnel to provide local user support; and to strengthen a cadre of medical librarians to meet local needs and partner with NLM in future outreach efforts.

In Central America, an area particularly prone to natural disasters, NLM collaboration with the Pan American Health Organization (PAHO) is providing prevention and preparedness training, materials and communications infrastructure for disaster information centers in Chile, Nicaragua, Honduras, and El Salvador.

The medical library community has also actively pursued useful international partnerships. "Sister library" arrangements have been established by the Medical Library Association (MLA) in Latvia and Antigua in which more than 100 US and Canadian libraries jointly provided ad hoc training, material and communications. A more typical model pairs libraries one-on-one and fosters closer ties, but may be more difficult to sustain over time due to the intensive commitments required. An excellent example of this approach is the award-winning "two Georgias" partnership established between Emory University in Atlanta and the National Information Learning Center in Tbilisi.[38]

NLM should continue its current special initiatives and identify promising new collaborative opportunities in selected countries. NLM should also investigate ways to promote effective library-peering and support models, including the Medical Library Association’s emerging international visitation program "Librarians without Borders."

NLM should also explore opportunities to work with foundations that address global health needs. It may be possible to improve the capacity to access and use electronic health information in conjunction with their international endeavors. For example, the development of a Woods Hole-type informatics training program might help raise international medical informatics literacy and practical skills.[39, 40]

Recommendation 2.3. Promote knowledge of the Library’s services through exhibits and other public programs.

Exhibits and public programs can play an important role in increasing science literacy, promoting awareness of health information services, and enhancing interest in careers in science, biomedical informatics, and librarianship. Both Changing the Face of Medicine and Visible Proofs, the most recent members of NLM’s acclaimed series of major historical exhibitions[41], directly address these objectives. In addition to the onsite installation, which attracts busloads of children and seniors, each exhibition has an extensive, permanent Web with K-12 curriculum materials developed in consultation with educators. NLM should also develop strategies for promoting wider use of K-12 curriculum materials in schools across the country.

Visitors at NLM exhibit. Board of Regents members Dr. Thomas Detre and Dr. Tenley Albright visit the NLM exhibition Visible Proofs: Forensic Views of the Body.

An excellent collaboration with the American Library Association (ALA) has resulted in the production of highly successful traveling versions of some of the exhibitions, which have appeared in dozens of public, college, and health sciences libraries in communities across the country. All of NLM’s exhibitions should travel. NLM should continue its excellent collaboration with ALA and work with other organizations to travel appropriate exhibitions to non-library sites. NLM should also explore collaborations with science museums, including joint development of exhibitions and related programs. Museums could serve as additional important dissemination points for resources maintained and developed
by the NLM and assist the Library in developing interactive resources that assist formal and informal learning across a broad range of topics relevant to biomedicine.

Primarily via the Regional Medical Libraries and other members of the National Network of Libraries of Medicine, NLM’s products and services are exhibited and, in some cases featured in Continuing Education classes and program sessions, at more than 250 national, regional, and local association meetings for health professionals, librarians, health educators, and consumer groups every year. NLM should continue this program, adjusting the number and the roster of meetings attended based on feedback from the exhibit staff and attendees.

NLM uses a wide range of techniques to reach the American public with the message that NLM has free, reliable Web-based information about health matters. The Library attempts to use a variety of media outlets, for example, public service announcements (PSAs) on television and radio and in magazines, public formal press releases to newspapers and journals, personal contacts with reporters and writers, announcements on the NLM Web site, and, most recently, weekly NLM Director’s podcasts that highlight information sources relevant to a currently newsworthy health topic.

NLM has also developed programs to encourage doctors to refer their patients to NLM information services. In the "Information Prescription" program for physicians, patients and libraries, patients are given an Rx scrip and referred by their doctors to MedlinePlus content that is directly relevant to newly diagnosed or chronic health conditions.[42] The American College of Physicians Foundation, the Fisher Center for Alzheimer’s Research, the Medical Library Association, the National Network of Libraries of Medicine, and the hospital library community have helped to promote physician participation. Similarly NLM and other NIH Institutes, in collaboration with the Friends of the NLM, have recently launched the NIH MedlinePlus magazine[43] for distribution in doctors’ waiting rooms.

NLM must broaden and intensify current efforts to reach consumers and health professionals, so they know how to access this information, continue to experiment with new media and new approaches, and assess the cost-benefit of different methods.

Recommendation 2.4. Test and evaluate digital infrastructure improvements (e.g., PDAs, intelligent agents, network techniques) to enable ubiquitous health information access in homes, schools, public libraries, and work places.

Continuing proliferation of portable and wearable digital devices, sensors, and wireless telecommunications options will offer new opportunities for ubiquitous access to both personal health data and authoritative information about health conditions and therapies. Many organizations will hold electronic personal health data (governments, health insurance companies, disease or condition specific organizations) in addition to patients and individual and networked health care providers. Developing the effective rules of the road for this degree of complexity is a formidable task. NLM should be a significant participant in ongoing technical research and policy making, which will necessarily involve many agencies and groups. Much work remains to be done to define the privacy and technical standards and guidelines for transmitting private health information over the Internet and other electronic pathways.

Fireman using wireless PDS in a disaster drill.
 
Emergency responders using wireless PDS in a disaster drill. Use of a wireless PDA in a disaster drill as part of the Wireless Internet Information System for Response in Medical Disasters (WIISARD) project, funded by NLM.
(Photo credit: Barbara Haynor, UCSD)

NLM should actively explore innovative technology, implementation, and policy alternatives for providing ubiquitous, appropriate access to health information. For example, an illustrative alternative approach to universal broadband would be a staged approach to access, where the availability of information could be explored through access media such as cell phones or PDAs in locations with problematic terrestrial communications, and followed up through health information access nodes at libraries, clinics or community-based organizations. Resolving the issues of direct consumer access to health information should be complemented with changes in the way health information is delivered. For example, it may be more effective to work toward the development of intelligent agents that can recommend actions, guided by the values, preferences and expectations of the patient and clinicians.

Recommendation 2.5. Support research on the application of cognitive and cultural models to facilitate information transfer and trust building and develop new methodologies to evaluate the impact of health information on patient care and health outcomes.

NLM has compiled an extensive record of deploying robust, multidimensional evaluation research that has been instrumental in creating and continually improving its database and Web site offerings for researchers, educators and the general public. These methodologies include usability testing, qualitative user feedback and customer satisfaction surveys, automated quantitative data collections and Web log analyses, and Internet performance and connectivity monitoring.[44] More research is needed, particularly in the area of documenting impacts on health behavior and health outcomes that are attributable to information use.

Inupiat Eskimo villager. Remote Inupiat Eskimo village in the Arctic — Buckland, Alaska.

The trust patients and other health consumers place in health information, sources, and providers may be a key factor affecting consumer use of such information, and ultimately the impact of such information on their health decisions, behaviors, and outcomes. Research on health information transfer and trust building needs to draw new insights from interdisciplinary approaches. The proposed applied research emphases would benefit greatly and should draw from and utilize cognitive science principles and cultural translation strategies. The research should identify and assess the varied elements that go into effective health communication, including types of messages and channels, use of natural and understandable language, role of information intermediaries, supporting and enabling community or peer groups and organizations, diversity and characteristics of persons receiving the information. The research also should consider the elements affecting overall consumer trust, such as sources, sponsors, reviewers and review process, selectors and selection process, public access channels, interpreters and screeners.