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National Library of Medicine Strategic Plan for Addressing Health Disparities 2004-2008

NLM Mission/Vision Statement

Overview of NLM Strategy for Addressing Health Disparities.

3.0 AREAS OF EMPHASIS IN COMMUNITY OUTREACH, INFORMATION DISSEMINATION, AND PUBLIC HEALTH INFORMATION

Area of Emphasis 3.1 Promote Use of Health Information by Health Professionals and the Public

Improved Health Information Resources

Objective 3.1.1 Improve delivery of health information, through the development of easy-to-use information resources such as MedlinePlus that are sensitive to cultural diversity issues, educational level, and language

Objective 3.1.2 Improve delivery of health information, through the development of easy-to-use information resources such as ClinicalTrials.gov that are sensitive to cultural diversity issues, educational level, and language

Better Access to HIV/AIDS Information. 6

Objective 3.1.3 Promote improved access to HIV/AIDS information to health professionals, patients, the affected community and their caregivers, as well as the general public in minority communities

Objective 3.1.4 Collaborate in Hosted Information on Treatment and Care of HIV/AIDS (HITCH)8

Better Access to Environmental Health Information. 10

Objective 3.1.5 Improve delivery of health information, through the development of easy-to-use information resources such as Tox Town that are sensitive to cultural diversity issues, educational level, and language

Objective 3.1.6 Expand activities with the Historically Black Colleges and Universities (HBCUs) to provide information about environmental health and health disparities to include more broadly members of minority and low socioeconomic communities

Improved Health Information for Specific Populations

Objective 3.1.7 Develop a set of population-specific mini web sites that focus on the issues of particular populations or geographic areas.

Objective 3.1.8 Develop culturally and linguistically appropriate health information for refugees and their caregivers

Improved Health Information for Native Americans

Objective 3.1.9 Complete, evaluate, and follow-up Tribal Connection Phase IV-Four Corners

Objective 3.1.10Complete, evaluate, and follow-up Native American Listening Circles

Objective 3.1.11Implement and follow-up Native American Outreach Evaluation at Community-Based Outreach Symposium

Objective 3.1.12Continue, evaluate, and extend Native American Powwow Initiative

Objective 3.1.13Continue, evaluate, and enhance Tribal Connections-Related Web Sites

Objective 3.1.14Participate in Sacred Breath tribal diabetes project

Improved Health Information for Hispanics.

Objective 3.1.15 Assess the benefits of MedlinePlus with Hispanic patients in a diabetes care clinic.

Objective 3.1.16 Improve the usability of home telemedicine systems with minority and senior diabetic patients.

Regional and National Networking

Objective 3.1.17Ensure continued coordination of regional National Network of Libraries of Medicine (NN/LM) services which include providing equal access to health information by members of the general public and health professionals.

Objective 3.1.18Expand partnerships among various types of libraries and community-based organizations with the goal of forming community coalitions to improve access to health information for members of minority and underserved populations as well as health professionals serving these populations.

Objective 3.1.19Develop a plan to provide opportunities for minority organizations and institutions that serve minority and underserved populations to enhance their competitiveness in seeking NLM funding.

Area of Emphasis 3.2 Strengthen the Informatics Infrastructure for Biomedicine and Health through Training Health Professionals and the Public in the Use of NLM and other Health Information Resources.

Objective 3.2.1 Train minority health professionals, information professionals, and community members to use NLM and other quality health information resources.

Objective 3.2.2 Train scientists and students in medical informatics research. 30

Objective 3.2.3 Develop an internship program for tribal leaders

Area of Emphasis 3.3 Conduct and Support Informatics Research. 32

Objective 3.3.1 Genetics Home Reference (GHR): Conduct studies of users of health resources on the Internet to assess their information needs and use patterns.

Objective 3.3.2 Conduct health literacy research. 32

Objective 3.3.3 Develop an automated system for machine translation‑based cross‑language information retrieval


NLM Mission/Vision Statement

Over the past half century, the nation’s investment in scientific research has resulted in unprecedented revolutionary progress in biological, medical, and material sciences. Information technology holds the promise of delivering specific knowledge in a timely manner to billions of people worldwide, in ways undreamed of even a short time ago. The National Library of Medicine (NLM), in pursuit of its longstanding mission to acquire, organize, and disseminate health-related information, now has the opportunity to provide near-instantaneous reliable access to high quality health information resources when and where decisions are made. The support of NIH's efforts to understand and eliminate health disparities between minority and majority populations is an integral part of NLM's mission.

Overview of NLM Strategy for Addressing Health Disparities

NLM is directing many of its efforts toward remedying the disparity in health opportunities experienced by important segments of the American population. These efforts are based on the belief that improving access to affordable and easy-to-use health-related information (in the form of published literature, databases, and the authoritative content of others) can help solve health disparities. Collection and database development is critical to this. The advanced information products and services of the National Library of Medicine are built on the foundation stone of its unparalleled collections. The Library today is seen as a principal source of biomedical information and the NLM's many high-technology programs are infused with the confidence and competence resulting from a century and a half of experience in filling the information needs of health professionals. The Library continues to place primary emphasis on its role as acquirer, organizer, and disseminator of health-related information.

The Library is devoting considerable attention and resources to improving access by health professionals, patients, families, community-based organizations, and the general public to information, with special emphasis on rural, minority, and other underserved populations. NLM firmly believes that improved access to health information in MEDLINE, MedlinePlus, ClinicalTrials.gov, and the Library's other computerized databases will result in higher quality health care for the Nation's citizens.

In the following areas of emphasis, NLM utilizes a number of strategies to ensure access to health-related information:

  • Improving the information infrastructure and communications capabilities of minority communities.
  • Employing communication methods that are racially and culturally sensitive and appropriate.
  • Increasing the scope of information products and services to include cultural, psychological, behavioral, social, gender-based and environmental influences.
  • Building partnerships with community-based and professional organizations.
  • Strengthening the capacity of minority communities
  • Improving the infrastructure at minority academic institutions

NLM incorporates public review and comment on its health disparities programs in several ways. This Strategic Plan for Addressing Health Disparities 2004-2008 is based closely on the NLM Long Range Plan 2000-2005 and follows its overall structure and content. The development of the Long Range Plan incorporated comments received from well over 100 individuals as well as members of the NLM Board of Regents and other advisory groups. The national Community-Based Outreach Symposium to be held in early December 2004 will assist in evaluating and refining NLM’s health disparities programs (see Objective 3.1.11). Additionally, NLM’s Board of Regents Subcommittee on Outreach maintains an active role in overseeing NLM’s outreach activities.

3.0 AREAS OF EMPHASIS IN COMMUNITY OUTREACH, INFORMATION DISSEMINATION, AND PUBLIC HEALTH INFORMATION

Area of Emphasis 3.1 Promote Use of Health Information by Health Professionals and the Public

Improved Health Information Resources

Objective 3.1.1 Improve delivery of health information, through the development of easy-to-use information resources such as MedlinePlus that are sensitive to cultural diversity issues, educational level, and language.

In 1998, NLM began to provide health information to consumers through a new website, MedlinePlus. This was in direct response to data which showed that NLM’s MEDLINE database, available free on the web since June of 1997, was being searched by members of the public seeking health information for themselves and their families. It was estimated at that time that 30% of searches were being done by the public. Although many members of the public are able to obtain useful information from the research literature covered in MEDLINE, it is not the most appropriate place for most citizens to seek health information. In response to this need, NLM developed MedlinePlus, guided by continuous input from its users and an NIH Advisory Group.

MedlinePlus is a resource that health professionals and especially consumers can depend on for information that is authoritative and up to date. It provides access to information produced by the National Library of Medicine, such as preformatted searches of MEDLINE, plus links to information produced by the National Institutes of Health and other trusted sources on over 650 diseases and conditions. Databases of full-text drug information, an illustrated medical encyclopedia, lists of hospitals and physicians, dictionaries, health information in Spanish, extensive information on prescription and nonprescription drugs, health information from the media, and links to thousands of clinical trials through ClinicalTrials.gov are also included. MedlinePlus is updated daily. Our emphasis is on organizing the full-text publications produced by the NIH Institutes and other federal government organizations.

Responding to the American Customer Satisfaction Index (ASCI) survey of MedlinePlus users indicate the highest level of satisfaction with the service than any other measured federal website., but the service is reaching disproportionately fewer members of minority populations. In addition, activity logs indicate that most MedlinePlus en español use is from outside the U.S., so more outreach is needed to the U.S. Hispanic population. Lastly, there is need for additional health information to reach low literacy populations. Both of these are high risk populations for health disparities, as are members of other minority and low income groups. NLM’s goal is to continue to develop and test new ways of presenting the website that will enhance its appeal and usefulness to these populations and to identify and link to additional resources that will meet their special health information needs. The intended outcome is for MedlinePlus to become a major web resource for health information for those impacted by health disparities so that they will have access to the same quality health information as the rest of the population. A key component of this strategy is to work through NLM’s National Network of Libraries of Medicine (NN/LM) to reach libraries, community groups, faith based organizations, disease support and self help groups, and others, so that the public will know where to go to find current, accurate, and understandable health information and clinical trials.

The major objectives in NLM’s proposed five-year program include:

  • Conduct research into the health information needs of minority populations who are using the internet to find information for themselves or family members;
  • Identify and make available on MedlinePlus additional health information which is sensitive to culturally diverse groups;
  • Work with other Institutes to increase the number of topics covered by NIHSeniorHealth to reach low vision seniors and others.
  • Investigate and test new ways of presenting the MedlinePlus website so that it meets their health information needs;
  • Work with libraries, community, faith based and other organizations, and consumer advocacy groups to ensure that these resources are available, known, and used;
  • Test new ways of reaching these populations and evaluate their effectiveness.
3.1.1.1 Action Plan
  • Conduct studies of minority users of health resources on the Internet to assess their information needs and use patterns;
  • Identify and make additional non-English resources available on MedlinePlus;
  • Identify and make available on MedlinePlus additional health information which is sensitive to culturally diverse groups;
  • Collaborate with NIH Institutes to identify topics needing Spanish translation and encourage increased emphasis in this area;
  • Develop additional interactive tutorials aimed at reaching low literacy and Spanish speaking users;
  • Conduct usability testing of MedlinePlus with minority and low literacy users;
  • Disseminate information about MedlinePlus to health professionals, health care organizations, libraries, health care, community, faith based, and other organizations who work with minority and low income populations;
  • Exhibit at national meetings of minority health professional organizations and national groups which have a minority focus;
  • Fund projects with libraries, community, faith based and other organizations that reach out to minority and low income populations to improve their access to health information.
3.1.1.2 Performance Measures
  • Number of focus groups with minority populations
  • Number of hits to Spanish medical encyclopedia
  • Number of hits to Spanish interface to MedlinePlus
  • Number of usability studies conducted with minority and low literacy populations
  • Number of Spanish language promotional materials distributed
  • Number of additional links to Spanish language materials
  • Number of additional Spanish language interactive tutorials provided
  • Number of additional English language interactive tutorials provided
  • Number of additional links to materials in health disparity focus areas
  • Number of projects funded which target minority groups and health disparities
  • Number of exhibits at national and regional meetings which target minority groups and health disparities
3.1.1.3 Outcome Measures
  • Results of focus groups translated into approaches to reaching the targeted populations
  • Increased use of MedlinePlus by minority populations
  • Usability study results and user feedback used to guide development of MedlinePlus
  • Satisfaction levels of minority users of MedlinePlus
  • Evaluations of funded projects which target minority groups and health disparities

Objective 3.1.2 Improve delivery of health information, through the development of easy-to-use information resources such as ClinicalTrials.gov that are sensitive to cultural diversity issues, educational level, and language.

3.1.2.1 Action Plan

Radio spots for clinical trials. FDA and NLM have collaborated to increase awareness about ClinicalTrials.gov.

Two 60-second audio news features were prepared about ClinicalTrials.gov. Dr. Benjamin S. Carson, Director of the Division of Pediatric Neurosurgery of Johns Hopkins University, recorded one of the 60-second audio news releases about clinical trials and ClinicalTrials.gov. The feature aired on 399 radio stations across the United States and was played 762 times; more than 2.2 million people heard it. To reach Spanish speaking consumers, Dr. Elmer Huerta, Director of the Cancer Preventorium at the Washington Hospital Center, recorded the same information in Spanish. It was broadcast on 69 Spanish language radio stations and aired 305 times.

Three to five minute radio interviews in English and Spanish were presented about clinical trials and ClinicalTrials.gov. FDA Commissioner Dr. Mark McClellan participated in 13 interviews. The interviews aired 3,148 times on radio stations and local affiliates throughout the country and were heard by more than 7.8 million listeners.

Spanish interviews are being arranged with Amelie G. Ramirez, Dr.P.H., Professor of Medicine and Deputy Director, Chronic Disease Prevention and Control Research Center at Baylor College of Medicine. The interviews will be aired on Spanish language stations across the United States.

3.1.2.2 Performance Measures
  • The number of hits/requests at ClinicalTrials.gov before and after airing of the radio spots will be used as a proxy for effectiveness.
3.1.2.3 Outcome Measures
  • Increased use of ClinicalTrials.gov by minority populations
  • Increased awareness among Hispanics about the role of human research studies in supporting the practice of medicine and the use of ClinicalTrials.gov as a high‑quality consumer health information site.

Better Access to HIV/AIDS Information

Objective 3.1.3 Promote improved access to HIV/AIDS information to health professionals, patients, the affected community and their caregivers, as well as the general public in minority communities.

NLM is continuing to expand efforts to improve access to HIV/AIDS information to patients, the affected community and their caregivers, as well as the general public. A comprehensive AIDS information service is vital to enable people to combat the AIDS epidemic. Scientists, physicians, educators, and other health professionals need rapid access to the latest information on AIDS research, diagnosis, treatment, control, and prevention. Consumers require similar access to appropriate information for decision-making about their behavioral choices and treatment. Community-based organizations, clinics and other types of service providers also need access to high quality, accurate and timely information for their staff and clients. NLM initiated its efforts to work with consumers based upon recommendations from a joint NLM/OAR sponsored conference held in 1993 designed to elicit input from the community about needed services and resources. Since that time interactions with representatives of AIDS community-based organizations have indicated that there is a continued need for quality information products and services, training, and funding for local efforts to improve access. As the epidemic has expanded further into minority communities, the need for resources and training has increased significantly, rather than decreased. NLM is now working with grassroots organizations that focus on the immediate needs of socioeconomically disadvantaged minorities to assist in developing infrastructure for information access. The goal is to enable organizations to provide access to quality information resources to their clients, staff, and community, as well as to incorporate the use of accurate information into the routine conduct of their business.

The major objectives in NLM's AIDS outreach and training program include: a) Providing an annual funding program to enable community organizations, health departments, and libraries to provide access to electronic resources, training in the use of these resources, expanding collections, Internet connections, development of locally specific information materials, town hall meetings, and opening access to collections and document delivery services. (2) Updating HIV/AIDS information resources with Spanish language enhancements, including translations of titles and summaries of clinical trials, development of training resources and supporting materials, translation of the current glossary, and other related enhancements to make HIV/AIDS databases more useful to Hispanic communities. (3) Training courses for faculty, staff and students at HBCUs, Minority Educational Institutions, and their local communities in accessing and using electronic HIV/AIDS resources

3.1.3.1 Action Plan
  • Issue RFQ for AIDS Community Information Outreach Program
  • Publicize and promote AIDS Community Information Outreach Program and encourage proposal submissions
  • Work with community organizations to promote an understanding of the role of information and information access in fighting AIDS
  • Formalize collaboration with the United Negro College Fund Special Programs (UNCFSP), Inc. to train faculty and staff in the use of NLM’s electronic information resources.
  • Work with UNCFSP to develop selection criteria for faculty initiated information projects and curricula.
  • Host a meeting for faculty and staff from UNCFSP member schools about project and NLM programs and services.
  • Make competitive awards as part of UNCFSP project; monitor awards; review progress; modify as appropriate
  • Expand UNCFSP program, to additional schools
  • Work with minority educational institutions and other government agencies to co-sponsor conferences with opportunities for training workshops and information dissemination
  • Conduct presentations and training sessions at meetings of minority health professionals such as the Black Nurses Association
  • Conduct training courses at HBCUs, Hispanic Serving Institutions, Tribal Colleges and other institutions with high minority populations. Invite participation in these training courses by representatives of local community organizations
  • Plans for fy2004-6 include: Develop selection criteria for UNCFSP projects
    Hold meetings with UNCFSP faculty and staff
    Solicit and award first round of funding for UNCFSP information projects
    Monitor, evaluate and modify UNCFSP program
    Continue UNCFSP funding program
    Sponsor conferences
    Conduct presentations and training courses
    Provide awareness opportunities and training to community organizations
    Encourage participation in activities and programs offered
    Issue AIDS Community Information Outreach solicitation annually
    Encourage participation in program by community-based minority organizations
3.1.3.2 Performance Measures
  • Number of community-based organizations submitting proposals
  • Number of faculty, staff and students trained from minority educational institutions
  • Number of training courses held at HBCUs, minority institutions, or at minority health professional conferences/meetings
  • Number of projects funded at minority institutions
3.1.3.3 Outcome Measures
  • NLM plans to measure impact and outcomes by tracking new awards made and analyses/findings disseminated by awardees and staff.

Objective 3.1.4 Collaborate in Hosted Information on Treatment and Care of HIV/AIDS (HITCH)

3.1.4.1 Action Plan

HITCH is collaboration between the National Library of Medicine, the Center for HIV information at the University of California San Francisco and the University of KwaZulu-Natal, Nelson R. Mandela Medical School in South Africa. It is intended to assess the existing needs for HIV/AIDS medical information in the province of KwaZulu Natal and identify key issues in the adaptation and dissemination of this information. The purpose of the pilot is to assess the technical feasibility of this information dissemination model, its potential to support the work of the President’s Emergency Plan for AIDS Relief (PEPFAR) in Africa, and to explore the potential role of medical libraries in its implementation. The following activities are being pursued during October 2003-September 2004:

  • An informal needs assessment of selected health care professionals in KwaZulu-Natal.
  • The review and selection of existing HIV/AIDS care and treatment guidelines, online textbook chapters, and training materials
  • The electronic production and transfer, in collaboration with the University of KwaZulu-Natal Medical School Library, of selected HIV/AIDS information to the University of KwaZulu-Natal Medical School’s HIV/AIDS Information Database
  • The creation of clinician support tools on administering antiretroviral therapy, treating opportunistic infections and preventing mother-to-child transmission of HIV.
  • Establishment of a server at the University of KwaZulu-Natal, Durban to host “mirror” versions of the HIV InSite and Women, Children, and HIV Web sites.
  • In collaboration with the NLM, an assessment of the capacity of in-country medical libraries to play a key role in adapting and disseminating HIV/AIDS clinical information.
  • A strategy for the electronic dissemination of HIV/AIDS treatment information and training materials to health care professionals in other countries participating in the President’s PEPFAR initiative.
3.1.4.2 Performance Measures
  • Satisfactory completion of each of the above activities.
3.1.4.3 Outcome Measures
  • Creation of a central Internet library that will allow PEPFAR-funded programs to benefit from materials developed by others, thereby improving access to high-quality information and avoiding duplication of effort.
  • Use of HITCH education and training materials by all levels of health professionals in South Africa and, ultimately, in other countries in which the HITCH concept may be expanded.
  • Enhancement of the capacity of medical libraries in Africa to provide access to HITCH content, and to participate in its development and dissemination in forms that are compatible with both the technical resources and literacy levels of African health professional users.

Better Access to Environmental Health Information

Objective 3.1.5 Improve delivery of health information, through the development of easy-to-use information resources such as Tox Town that are sensitive to cultural diversity issues, educational level, and language.

Tox Town was developed in 2003 to help users learn about potential toxins in their homes, schools, and communities. The site uses simplified graphic images to help users navigate through various locations to find information. Initial reception of the site by consumers has been very positive and NLM has conducted focus group testing on the site as well. A text-based Spanish language version has also been developed. Future strategies include developing additional environmental scenes beyond the town and city currently available. These scenes would address populations located in other parts of the country including a desert southwestern scene and a farm scene.

3.1.5.1 Action Plan
  • Identify and make additional non-English resources available on Tox Town
  • Identify and make available on Tox Town additional health information which is sensitive to culturally diverse groups
  • Develop and test Spanish interface to Tox Town
  • Conduct usability testing of Tox Town with minority and low literacy users
  • Disseminate information about Tox Town to health professionals, health care organizations, libraries, health care, community, faith based, and other organizations who work with minority and low income populations
  • Exhibit at national meetings of minority health professional organizations and national groups which have a minority focus
  • Fund projects with libraries, community, faith based and other organizations that reach out to minority and low income populations to improve their access to health information.
  • Plans for FY2004-2006 include:
    Conduct minority focus groups
    Add Spanish medical encyclopedia
    Develop Spanish interface to Tox Town
    Conduct usability study of Spanish interface
    Develop Spanish language promotional materials
    Evaluate use of Spanish language site
3.1.5.2 Performance Measures
  • Number of hits to Spanish interface
  • Number of Spanish language promotional materials distributed
  • Number of exhibits at meetings and conferences which target minority groups and health disparities
3.1.5.3 Outcome Measures
  • Increased use of Tox Town by minority populations

Objective 3.1.6 Expand activities with the Historically Black Colleges and Universities (HBCUs) to provide information about environmental health and health disparities to include more broadly members of minority and low socioeconomic communities.

The environmental justice movement took shape in the early 1980s, questioning inequities in the distribution of toxic waste sites that activists asserted were disproportionately located in minority and other low-income areas. In 1987, the United Church of Christ published a study, Toxic Waste and Race in the United States, calling attention to the association between hazardous waste facilities and the racial/socioeconomic composition of the communities hosting such facilities. The study reported that while economic status played an important role in the nationwide location of commercial hazardous waste facilities, the race of the residents proved to be a more significant determinate.

In 1990, then-Governor Clinton of Arkansas organized a group of seven governors to assess the state of the environment in the Delta Region covering 219 counties between Illinois and the Gulf of Mexico. A result of this initiative was the Mississippi Delta Project, an objective of which was to create partnerships among government, academia, private sector organizations, and community residents. Through these partnerships efforts were made to identify key environmental hazards, promote environmental quality, and reduce and, where possible, prevent these hazards from impacting on health and the environment. Emphasis was placed on affected persons in underserved communities. The National Library of Medicine was one of the federal agencies and institutes cooperating in the Mississippi Delta Project.

The initial mission of this project was to strengthen the capacity of Historically Black Colleges and Universities (HBCUs) to train health professionals to use NLM’s Toxicology and Environmental Health Information Program databases. Instructional resources were to be developed to support academic programs such as: 1) educational tools to increase awareness of information resources available, 2) instructional tools for teaching students and faculty how to use these information resources, and 3) a new mechanism to reach minority and underserved communities to increase their understanding of risks associated with exposure to toxic and hazardous chemicals

As a result of this project online searching has been integrated into the curricula at many of the HBCUs involved in the pilot project. Even further, several of the HBCUs have used this exposure to electronic information resources to implement programs in medical informatics. To date, over 80 HBCUs have participated in the extended project and training is continuing at HBCUs throughout the country. Reports from many of the HBCUs indicate that the awareness and interest generated by this training has enabled them to work collaboratively with other institutional components to bring these NLM resources as well as access to the Internet to their institutions. NLM conducted a formal assessment of TIOP which showed the profound impact that program has had on the participating schools.

To further extend the impact of this effort and to address the concerns about health disparities that may be associated with race, socioeconomic status, environmental factors, etc., this effort was expanded from the HBCUs to include more broadly members of minority and low socioeconomic communities as well as other educational institutions serving minority populations.

NLM has expanded its work with HBCUs in breadth and scope as well as in size. TIOP’s name was changed to the Environmental Health Information Outreach Program (EnHIOP) and the scope broadened to include environmental health and health disparities. In addition the membership has been expanded to include 14 HBCUs, three tribal colleges, and three Hispanic Serving Institutions.

3.1.6.1 Action Plan
  • Collaborate with HBCUs, tribal colleges, and Hispanic Serving Institutions to hold training courses for faculty, staff and students
  • Collaborate with professional organizations of minority health professionals to hold training courses
  • Identify minority community-based organizations to collaborate with for training and information dissemination
  • Disseminate information about NLM’s resources and services
  • Develop materials for use by minority organizations, institutions, and health professionals
  • Conduct presentations at conferences
  • Sponsor or co-sponsor conferences and meetings to create opportunities to raise awareness and disseminate information.
  • Encourage/fund the development and implementation of local information access or information use programs and projects
  • Plans for FY2004-2006 include:
    Collaborate with HBCUs, tribal colleges, and Hispanic Serving Institutions to hold training courses for faculty, staff and students
    Collaborate with professional organizations of minority health professionals to hold training courses
    Identify minority community-based organizations to collaborate with for training and information dissemination
    Disseminate information about NLM’s resources and services
    Develop materials for use by minority organizations, institutions, and health professional
    Sponsor or co-sponsor conferences and meetings to create opportunities to raise awareness and disseminate information.
    Encourage/fund the development and implementation of local information access or information use programs and projects
3.1.6.2 Performance Measures
  • Number faculty, staff, students, community members trained
  • Number of items developed
  • Number of conferences sponsored
  • Number of conference attendees
  • Number of new projects developed
3.1.6.3 Outcome Measures
  • Ongoing qualitative assessment of TIOP
  • User satisfaction with training
  • Tracking new projects supported and analyses of progress.

Improved Health Information for Specific Populations

Objective 3.1.7 Develop a set of population-specific mini web sites that focus on the issues of particular populations or geographic areas

Special populations have special needs for health information, as do the institutions and individuals who work within these communities. The National Library of Medicine has created a series of web sites aimed at some of these populations. The web sites currently available are: Arctic Health site (http://arctichealth.nlm.nih.gov); Asian American Health (http://asianamericanhealth.nlm.nih.gov); and American Indian Health (http://americanindianhealth.nlm.nih.gov). Each of these sites has sections devoted to diseases and conditions important for the specific population, traditional medicine, research information, and topics of particular concern for the group such as pollution in the arctic. NLM is developing collaborative relationships with relevant groups for the ongoing maintenance of each web site. For example, NLM is collaborating with the Asian Pacific Islander Health Forum, to identify additional material for inclusion in the web site as well as for promotion of the site in the Asian American community. Other planned sites include African American health, Pacific Islander health, and Hispanic/Latino health.

In addition to web sites, there is a need to develop additional tools to support data analysis and population-based research about minority populations. Some of this information is available through the census and some embedded in other datasets. Geographic Information Systems (GIS) hold great promise to enable researchers, policy makers, and communities examine health data in community contexts along with other types of data such as toxic releases, locations of institutions, etc.

NLM’s goal includes the development of a series of web sites and other tools that will serve the needs of policy makers, researchers, health providers, and members of the communities involved. The web sites may serve as focal points for gathering into one place important information about the health care issues and research relevant to that population or area. NLM will enter into partnerships with local or other significant groups to maintain the web site and potentially expand it to serve additional needs of the constituents.

3.1.7.1 Action Plan
  • Identify special populations or subpopulations (e.g., African American Seniors) as targets for these web sites
  • Develop web site
  • Identify and negotiate with local university, library, community organization, or other type of organization to maintain the web site and develop accompanying materials and outreach plans
  • Continue to monitor and assess web sites
  • Plans for FY2004-2006 include:
    Identify target populations for web sites
    Design and develop web sites
    Negotiate with local group for web site maintenance
    Test and evaluate sites
    Initiate and assess pilot studies of GIS for use with data about specific population groups
3.1.7.2 Performance Measures
  • Number of page views
  • Number of unique users
  • Number of inquiries
3.1.7.3 Outcome Measures
  • Improved access to population-specific information
  • Associated projects/programs developed

Objective 3.1.8 Develop culturally and linguistically appropriate health information for refugees and their caregivers

Each year, more than 15 million people seek political asylum or become refugees in various parts of the world. Of these, the United States welcomes the largest number. Most are displaced persons from developing countries where infectious diseases (e.g., tuberculosis, hepatitis, malaria, and various parasitic and emerging diseases) are prevalent. In addition to communicable diseases, other health problems that are specific to and characteristic of refugees include the physical after-effects of war, torture, and displacement. Refugees are also at risk from a range of mental health problems associated with their previous experience, which may have included periods of war and flight, torture, rape, witnessing violent death, loss of friends and family. Migrants, broadly defined, require a broad range of health services. In all cases, it is important that information be culturally and linguistically appropriate for the respective consumer and their providers.

3.1.8.1 Action Plan

To improve access to quality health information, a collaborative partnership has been formed to develop an information network that will enable resettled refugees, their health care providers and public health administrators to gain access to information relevant to refugee health. This network will include a searchable web site and database, and will be linked to existing sites specializing in refugee health, as well as medical information databases from the National Library of Medicine and other credible sources of health information. The network will also facilitate communication between health professionals involved in refugee health by using email and a list serve to keep all subscribed users informed and in contact with each other.

3.1.8.2 Performance Measures
  • Number of individuals trained
  • Number of training sessions
  • Number of items added to the database
  • Number of languages included in database
3.1.8.3 Outcome Measures
  • Satisfaction of health care providers
  • Satisfaction of consumers

Improved Health Information for Native Americans

Objective 3.1.9 Complete, evaluate, and follow-up Tribal Connection Phase IV-Four Corners

The Four Corners Tribal Project in part extends the Tribal Connections activities into the Southwest, but also adds new features. The Four Corners Region includes the American Indian tribes and reservations located in the northwest corner of New Mexico, northeast corner of Arizona, southeast corner of Utah, and southwest corner of Colorado. The current Four Corners Project is a collaboration between three RMLs (Midcontinental, South Central, and Pacific Southwest), three Resource Libraries (Health Science Libraries at the Universities of Arizona, New Mexico, and Colorado, and NLM. The focus in the current phase is on: conducting needs assessments on selected reservations, with emphasis on health providers serving tribal communities; developing a list of key tribal contacts in the region (and including them in a database); gathering information on key tribal health and health information services in the region (for inclusion in a regional MedlinePlus Go Local web site); and identifying lessons learned from this and the prior Tribal Connections projects (for inclusion in a publicly accessible repository). The project includes a strong evaluation component. Additionally, the Resource Libraries will be conducting some direct outreach to tribes as a parallel effort. Further outreach and special projects are anticipated in a prospective TC Four Corners Phase V.

3.1.9.1 Action Plan
  • Complete Tribal Connections Phase IV-Four Corners, in Collaboration with the Midcontinental Regional Medical Library and Others.
  • Evaluate Tribal Connections Phase IV-Four Corners, including possible follow-up in this geographic region.
  • Implement Tribal Connections Phase V-Four Corners Follow-up.
3.1.9.2 Performance Measures
  • Number of planning meetings or activities, and number and geographic spread of participants.
  • Number of needs assessments conducted.
  • Number of tribal site visits conducted.
  • Number and type of tribal participants in site visits.
  • Participation of evaluators in needs assessments and site visits.
3.1.9.3 Outcome Measures

For Tribal Connections Four Corners Phase IV:

  • Number and quality of needs assessments completed.
  • Quality of tribal participation in needs assessment.
  • Nature and comprehensiveness of needs identified.
  • Number and quality of follow-up projects identified.
  • Number of tribal contacts identified and entered into database.
  • Lessons learned and submitted to community outreach clearinghouse.
  • Tribal health sources and services identified and included in Regional GoLocal.
  • Quality of collaboration among project participants.

For Tribal Connections Four Corners Follow-On outreach and special projects:

  • Number of tribal health providers trained.
  • Results of training (and other interventions).
  • Number and type of special projects implemented.
  • Number of current tribal sites engaged in intensive follow-up.
  • Number of new tribal sites engaged in tribal connections program.
  • Number of new or enhanced tribal connections partnerships.
  • Number of new or enhanced computer access terminals, local and wide area networks, and Internet connections.
  • Levels of tribal awareness of web-based health information resources relevant to tribal health concerns.
  • Levels of satisfaction with and efficacy of the tribal connections consultation and planning process--as viewed by the relevant tribal staff and leadership.
  • Levels of satisfaction with and efficacy of the tribal connections-related web sites, training, and special activities--as viewed by the participants.
  • Changes in the quality and performance of the tribal technical infrastructure including web sites needed to support access to and use of health information.
  • Changes in health information seeking behavior of participants in training sessions and special activities.
  • Changes in health behavior and, to the extent measurable, health decisions and outcomes of participants in training sessions and special activities.
  • Changes in overall capacity of the participating tribal communities to make use of health information resources to enhance the health of the community.

Objective 3.1.10 Complete, evaluate, and follow-up Native American Listening Circles

NLM learned, in the initial phases of Tribal Connections, that community-based consultation was an essential part of successful tribal outreach. On the advice of NLM’s tribal advisors, in particular Dr. Ted Mala, NLM extended the tribal community consultation to include the concept of “Listening Circles.” These circles are well known to Native Americans as a process of open dialog between individuals to build understanding and trust, and share perspectives of respective needs, visions, and capabilities. The first round of Listening Circles includes circles in three diverse locations—the (American Indians); Hawaii (Native Hawaiians); and Alaska (Alaska Natives). The first two circles have been completed, and the third is pending. Based on evaluation and related follow-up associated with the first three circles, a determination will be made as to the need and value-added of conducting additional circles in other parts of the country.

3.1.10.1 Action Plan
  • Complete initial round of Listening Circles—Dakotas (American Indians), Hawaii (Native Americans), Alaska (Alaska Natives).
    Evaluate Listening Circles and Possible Follow-up.
    Plan and Implement Select Listening Circles Follow-up Project(s).
    Determine Need for Further Listening Circles, and Implement as Needed.
3.1.10.2 Performance Measures
  • Number and timing of circle planning activities.
  • Participation of Native Americans from host area in circle planning.
  • Extent of collaboration planning process.
3.1.10.3 Outcome Measures

For the Listening Circles (including any additional Listening Circles conducted):

  • Quality of circle participation by Native Americans and by NLM.
  • Level of shared understanding achieved.
  • Number and type of associated complementary site visits and cultural activities.
  • Number, type, and quality of follow-up ideas generated.
  • Overall value-added of circle and related activities.
  • Number, timing, and quality of circle follow-up activities implemented.
  • Number of current tribal sites engaged in intensive follow-up.
  • Number of new tribal sites engaged in tribal connections program.
  • Number of new or enhanced tribal connections partnerships.

For Listening Circle Follow-Up Outreach and Special Projects:

  • See performance measures listed under Tribal Connections Phase IV outreach and special projects listed earlier.

Objective 3.1.11 Implement and follow-up Native American Outreach Evaluation at Community-Based Outreach Symposium

In collaboration with two RMLs (Midcontinental and Middle Atlantic), NLM is hosting a national Community-Based Outreach Symposium in early December 2004. The symposium idea emerged in part from the realization, during Tribal Connections Phases I and II, that community-based outreach was an essential ingredient of effective tribal outreach. Or put differently, successful tribal outreach is likely to be community-based outreach. The symposium is co-funded by NLM and the NIH Office of Minority Health. A subtheme is evaluation of NLM’s Native American outreach program. With about seven years of relevant outreach activities, NLM concluded that the timing was right for an evaluation. The symposium includes several Native American speakers and panelists, and a special post-symposium work session that will focus solely on evaluating NLM’s Native American outreach. It is anticipated that the symposium and special work session will develop ideas for refinement of NLM’s Native American outreach program and will identify varied follow-up possibilities.

3.1.11.1 Action Plan
  • Implement Community-Based Symposium with Subtheme on Evaluating NLM’s Native American Outreach.
  • Plan and Implement Select CBO Symposium Follow-up Projects.
3.1.11.2 Performance Measures
  • Number and quality of symposium planning activities.
  • Quality of collaboration among symposium planners.
  • Number of Native Americans included on program and as invited guests.
3.1.11.3 Outcome Measures
  • Quality and diversity of Native American participation in the symposium
  • Quality of post-symposium Native American outreach evaluation work session.
  • Number and type of tribal outreach “lessons learned” identified at the symposium and work session.
  • Suggestions for refinements and enhancements to NLM’s Native American outreach.
  • Number and type of follow-up ideas identified.
  • Number and type of follow-up ideas actually implemented.

Objective 3.1.12 Continue, evaluate, and extend Native American Powwow Initiative

Another outgrowth of the original Tribal Connections is the NIH Native American Powwow Initiative. This initiative began in the offices of the NIH Acting Deputy Director and NIH Director’s Equal Employment Opportunity Officer, who both realized that the Tribal Connections Pacific Northwest and Southwest might be relevant closer to NIH’s home base in Bethesda, MD. NIH and NLM collaborated on the initial formulation of the powwow initiative. The initiative is now in its third year, with several institutes participating. To date, NLM HQ has participated in about 18 powwows, all but one in the greater mid-Atlantic region (states of NC, VA, MD, DE, NJ, PA). The NLM involvement includes the OD/OHIPD, OD/OA, OD/OCPL, and OCCS. The NLM powwow exhibit includes wireless “live” demonstrations of MedlinePlus and other web sites, when electric power and wireless cell connections are available at the powwow location.

3.1.12.1 Action Plan
  • Complete Year Three of the NIH Native American Pow-Wow Initiative.
  • Evaluate Pow-Wow Initiative, and Develop Future Extension Plan, in Collaboration with the Office of the NIH Director and Others.
  • Implement Pow-Wow Extension Plan on a Phased Basis.
3.1.12.2 Performance Measures
  • Number and quality of powwow planning activities.
  • Number of pre-powwow staff training activities.
  • Efficient powwow scheduling and logistical arrangements.
3.1.12.3 Outcome Measures
  • Number, geographic spread, and diversity of powwows selected for inclusion.
  • Estimated powwow attendance and percentage of attendees visiting the NIH/NLM exhibit tables.
  • Number of persons watching or participating in online computer searching demos at the powwows.
  • Anecdotal evidence of the powwow attendees’ interest in NIH/NLM exhibits and prospective (or actual) use of health information from exhibited web sites.
  • Overall value added of powwow participation, as compared with other types of outreach and with the associated financial and staff costs and logistical arrangements.
  • Lessons learned for effective powwow participation and implications for future powwow activities in the Mid-Atlantic region and other regions.

Objective 3.1.13 Continue, evaluate, and enhance Tribal Connections-Related Web Sites

Over the last seven years, NLM has developed or sponsored several web sites that focus on health and other information relevant to Native Americans. Perhaps the first was the original Tribal Connections.org web site, originally developed to specifically support the Tribal Connections Phase I. This web site has gradually transitioned to a broader focus. Then came the Native American Health page on MedlinePlus, followed by several specialized web sites (see earlier discussion) including the Arctic Health web site with coverage of Alaska Natives and Arctic health research, the American Indian Health site, and a Pacific Islander site (to include Native Hawaiians) still in development. Also a Tribal Health Connections web site was developed in connection with a Gates Foundation supported project in parallel with Tribal Connections Phase II Pacific Southwest. It would seem timely to conduct an evaluation of all these web sites in order to help discern the optimal strategy going forward for NLM’s Native American web presence.

3.1.13.1 Action Plan
  • Develop Plan for Evaluating and Upgrading of Tribal Connections Web Site
  • Implement Web Site Evaluation and Upgrade Plan.
  • Evaluate Web Site Upgrade.
3.1.13.2 Performance Measures
  • Major web site planning and development activities.
  • Levels of staff and resource commitments to web site development.
  • Level and extent of Native American involvement in and feedback on web site design and content.
3.1.13.3 Outcome Measures
  • Number and results of usability testing, by web sites.
  • Number and results of user surveys, by web site.
  • Clarity of statements of web site missions and content priorities.
  • Native American views on efficacy and relevancy of web sites.
  • Level of cross-site collaboration on rationalization of web site missions and content.
  • Clarification of relationships of web sites to each other and to other Native American web sites, and to GoLocal web sites with Native American content.
  • Extent of coverage of and links to relevant Indigenous Peoples web sites.
  • Specific follow-up ideas for web site improvements and enhancements.
  • Changes in usage levels for the upgraded web sites by participants in training sessions and special activities.

Objective 3.1.14 Participate in Sacred Breath tribal diabetes project

A disproportionately high percentage of American Indians, Alaskan Natives and Native Hawaiians suffer from diabetes. Many of them live in remote, isolated areas where quality healthcare is not accessible. Prevalence of diabetes has more than tripled since 1990 in some communities, and it now affects about 17 million Americans. Native Americans are about three times more likely than whites to have the disease, according to the Agency for Healthcare Research and Quality.

3.1.14.1 Action Plan

MyCareTeam is an interactive health information technology application developed by the Imaging Science and Information Systems (ISIS) Center at Georgetown University, with support from the Department of Defense. It has been designed as a tool to help individuals with diabetes better manage their illness. The objective of the Sacred Breath initiative is to deploy MyCareTeam into a number of clinical environments to improve the effectiveness of various diabetes management programs for Native communities.

While the bulk of this project is being carried out by Georgetown University, NLM will participate by providing training in the use of MedlinePlus and other electronic health information resources at each site where the MyCare Team is deployed.

3.1.14.2 Performance Measures
  • Number trained
  • Number of training sessions
3.1.14.3 Outcome Measures

Improved Health Information for Hispanics

Objective 3.1.15 Assess the benefits of MedlinePlus with Hispanic patients in a diabetes care clinic.

3.1.15.1 Action Plan

In collaboration with the Upper Cardozo Health Center in Washington, DC and George Washington University, undertake a controlled field experiment with patients enrolled in the Diabetes Health Disparities Collaborative wherein diabetes patients will receive an information technology-based intervention to complement their regular patient education program. It will consist of (a) one-on-one health educator counseling on how to use the Internet and acquire good information about diabetes and related illnesses; (b) group computer classes that are offered to stimulate searching on the Internet for self-management on diabetes; (c)waiting room health educator, clerks, and medical assistants who assist patients in utilizing computers for searching NLM's MedlinePlus resource which is available in English and Spanish for this largely Hispanic patient population. Additionally, health center physicians will be trained in the use of electronic-based information resources and their integration into daily practice, with special emphasis on diabetes resources. Timeline: 18 months beginning in October 2004.

3.1.15.2 Performance Measures:

Increase number and proportion of patients who report use of MedlinePlus since their last appointment, identify MedlinePlus as a high quality Internet-based resource for diabetes information, and report that using MedlinePlus has positively affected their understanding of the disease and ability to self-manage their diabetes. Measure frequency and duration of use of medical services, adherence with appointments or medication regimens. Measure evidence of improved patient-provider communication in diabetes self-management.

3.1.15.3 Outcome Measures

Changes, relative to control group, in Hemoglobin A1C, blood glucose, cholesterol, and use of specialty services (e.g., retinal exam, foot exam, nutrition education class, diabetes education class).

Objective 3.1.16 Improve the usability of home telemedicine systems with minority and senior diabetic patients.

3.1.16.1 Action Plan

In collaboration with the Columbia University Department of Medical Informatics, undertake an outreach evaluation research project to reduce barriers to diabetes care using a home telemedicine system. The research will (a) analyze patient training sessions and identify aspects that contribute to successful outcomes; (b) characterize cognitive and non-cognitive factors that preclude or limit sustained use; (c) understand how health literacy plays a mediating factor in patients' use of the system; and (d) develop a system design framework so that participants with a wide range of skills can better manage their chronic illnesses. The patient population consists of both Hispanic and senior persons who have had little exposure to computer-based systems. Timeline: 12 months beginning October 2003.

3.1.16.2 Performance Measures

Number and characteristics of patients trained to system performance criteria, and those who are not, with emphasis on those cognitive and other skill sets hypothesized to be relevant to seniors and Hispanic patients. Cognitive and usability measures include varying levels of computer literacy; complexity of graphical user interfaces for novice users; physical limitations such as poor eyesight; variability in literacy, numeracy and basic health literacy levels.

3.1.16.3 Outcome Measures

Define alternative training strategies and protocols capable of reducing barriers to patients' productive use of current and next-generation home telemedicine systems

Regional and National Networking

Objective 3.1.17 Ensure continued coordination of regional National Network of Libraries of Medicine (NN/LM) services which include providing equal access to health information by members of the general public and health professionals

3.1.17.1 Action Plan

The NN/LM National Network Office will prepare the Request for Proposals for the 2006-2011 NN/LM contracts. The purpose of these contracts is to achieve at a minimum the following goals: a) develop collaborations among NN/LM libraries to improve access to and sharing of biomedical and electronic health information resources; b) promote awareness of and access to biomedical and electronic health information resources for health care providers, the public health workforce and the public; and c) develop, promote and improve access to electronic health information resources among Network member libraries, health care providers, the public health workforce, and organizations that provide health information to the public.

3.1.17.2 Performance Measure
3.1.17.3 Outcome Measure
  • Number of activities with a focus on minority groups and health disparities areas
  • Number of training sessions in which half or more than half of participants were from minority populations
  • Number of projects funded targeting minority and underserved groups
  • Number of exhibits at national health professional and consumer-oriented meetings that target minority and underserved populations.

Objective 3.1.18 Expand partnerships among various types of libraries and community-based organizations with the goal of forming community coalitions to improve access to health information for members of minority and underserved populations as well as health professionals serving these populations.

3.1.18.1 Action Plan:

The NN/LM contracts direct considerable resources and effort at the development, implementation and evaluation of outreach programs. The major focus of the outreach program is outreach to health care providers and consumer health information services. The program encourages and support collaborations and partnerships with Network member libraries through funded projects and agreements. The projects are designed to target:

a) Special populations

b) Health care providers and public health workers serving special populations

c) Minority institutions and those whose objective is to train minority health practitioners or those who serve minority populations

3.1.18.2 Performance Measure
  • Fund projects with libraries, community, faith-based and other organizations that work with minority and low-income populations to improve their access to health information.
  • Develop programs that focus on reaching minorities and underserved populations.
  • Develop programs to expand the awareness and use of NLM’s resources.
  • Train members of the target populations.
  • Sponsor technology fairs.
  • Exhibit at health professional and consumer-oriented national meetings that target minority and underserved populations.
  • Enhance the Internet access capabilities of Network member libraries.
3.1.18.3 Outcome Measure
  • Increase the number of individuals introduced to NLM's resources and services
  • Increase the number of partnerships formed
  • Evaluate funded projects which target minority and underserved populations

Objective 3.1.19 Develop a plan to provide opportunities for minority organizations and institutions that serve minority and underserved populations to enhance their competitiveness in seeking NLM funding.

NLM offers various funding opportunities through many of its divisions, i.e. Extramural Programs, Specialized Information Services, Telemedicine initiatives, and the NN/LM. NLM plans to increase its efforts to provide assistance to minority organizations and institutions and organizations that serve minority and underserved populations in applying for NLM funding and responding to Requests for Proposals. The 5,215 health sciences libraries in the NN/LM, which are a key component in NLM’s outreach efforts to address the health disparities in minority and underserved populations, provide valuable assistance in these efforts. The NN/LM provides technical assistance workshops that provide attendees with opportunities to enhance their proposal writing skills.

3.1.19.1 Action Plan:
  • Identify organizations to approach with offers of providing technical assistance workshops.
  • Assist in the development of materials for the workshops
  • Assist in the promotion of the workshops
  • Conduct technical assistance workshops prior to the issuance of RFPs
  • Develop materials based on the program areas issuing RFPs
  • Disseminate information on workshops to targeted organizations
  • Develop a mechanism to track which targeted organizations/institutions apply for NLM funding following attendance at workshops
3.1.19.2 Performance Measures
  • Number of targeted organizations/institutions participating in workshops
  • Number of individuals trained
  • Number of workshops held
3.1.19.3 Outcome Measures
  • Increased number of targeted organizations/institutions receiving training in proposal writing
  • Increased number of targeted organizations/institutions applying for NLM funding

Area of Emphasis 3.2 Strengthen the Informatics Infrastructure for Biomedicine and Health through Training Health Professionals and the Public in the Use of NLM and other Health Information Resources

Objective 3.2.1 Train minority health professionals, information professionals, and community members to use NLM and other quality health information resources

NLM recognizes that it is critical to establish relationships with health professionals, information professionals and members of organizations that encourage and foster communication and information access in local communities and with different segments of the population. It is of particular interest to ensure that the government is meeting the needs of minorities and underserved communities.

Access to the latest and best information is essential to medical decision-making for patients and their providers. Despite its tremendous potential, many members of minority communities do not have access to electronic information resources. Many minority health professionals serve in their own communities and also may lack access to or knowledge of these important resources.

NLM is approaching this program on a number of fronts. The five ethnic caucuses of the American Library Association (the American Indian Library Association, the Asian Pacific American Library Association, the Black Caucus of the American Library Association, the Chinese American Library Association and Reforma), the Office of Literacy and Outreach Services, ALA, and the National Library of Medicine will offer a program session on minority health information at the 2004 ALA Annual Meeting in Orlando, FL. The session will provide attendees with information that will increase their awareness of NLM's resources and services and skills that will allow them to better serve diverse populations in the area of health information. The five ethnic caucuses, OLOS and the NLM believe that the sharing of health information and knowledge within communities of color will result in improved health outcomes for diverse populations. The session will serve as the first step in building awareness of health information for minority librarians. Future projects will arise from needs identified at this conference.

Another mechanism that NLM is using to identify needs is through the librarians at the health sciences libraries of minority educational institutions. These librarians and their libraries service minority health professionals, students, and their communities and are uniquely situated to provide this input to NLM. NLM then uses this information to create products, programs, and services.

To facilitate access to and delivery of health science information through computers and telecommunication technology for health care providers, NLM is initiating a training program with the National Medical Assocation (NMA). Improving the ability of NMA’s members to use quality health information resources, including those from NLM, will enable them to remain current in their area of specialty, conduct medical research, improve patient care, involve their patients in clinical trials, and provide consumer level information for their patients. The initial plan is for NLM to provide training courses at NMA regional meetings to introduce physicians and their staffs to health information databases and other electronic resources and services. Later phases of this project will include working with additional health professional organizations.

3.2.1.1 Action Plan
  • Collaborate with the American Library Association (ALA) Ethnic Caucuses to provide conference support for health information programming
  • Plan and carry out an ALA program on minority health information resources and services.
  • Collaborate with the National Medical Association to plan and conduct training activities at regional meetings
  • Identify additional health professional groups and associations with which to collaborate
  • Conduct presentations or training activities at meetings of health professionals and health information professionals
  • Assess progress, barriers, outcomes of pilot minority consumer health outreach projects and refine program
  • Provide funding opportunities for local information access projects in minority communities.
  • Plans for FY2004-2006 include:
    Collaborate with the National Medical Association to plan and conduct training activities at regional meeting
    Conduct presentations or training activities at meetings of health professionals and health information professionals
    Provide funding opportunities for local information access projects in minority communities
3.2.1.2 Performance Measures
  • Number trained
  • Number of training sessions
  • Feedback from pre- and post- training surveys
  • Number and types of projects funded
3.2.1.3 Outcome Measures
  • Strategies for information dissemination in minority communities
  • Improved access to information

Objective 3.2.2 Train scientists and students in medical informatics research

3.2.2.1 Action Plan

The LHNCBC conducts an Informatics Training Program (ITP) for training in informatics science at the NLM. Students from Historically Black Colleges and Universities, students of Hispanic origin, and students from Tribal Colleges and Universities are eligible and encouraged to participate. The students work on informatics research projects in areas such as consumer health informatics, image processing, and language processing. The students work closely with senior staff at the Center and present what they have learned at the end of the summer in a seminar to the NLM community. LHNCBC advertises its Informatics Training Program at its public Web site, in mailings to professional schools, and in advertisements in a representative set of professional journals. LHNCBC participates in conference recruitment fairs. The Center actively participates in the National Association for Equal Opportunity in Higher Education (NAFEO), Hispanic Association of Colleges and Universities (HACU), and Washington Internships for Native Students (WINS) programs every summer.

3.2.2.2 Performance Measures

Objective 3.2.3 Develop an internship program for tribal leaders

To develop and implement an internship program for representatives from Native American tribes (including Native Alaskans and Native Hawaiians) to learn (1) about NLM’s programs and services, (2) how to use information resources and integrate them into their programs, (3) information technology, (4) information dissemination. The interns would study successful community-based projects funded by NLM and develop ideas on how to involve their community in this process.

NLM’s experience with Native American tribes and communities indicates that may not only be unfamiliar with health information resources, but equally unfamiliar with the process of obtaining funding and implementing programs in information access. They are not likely to have the expertise to provide training in the use of information resources and services. An information internship for staff from tribal groups may provide the needed experience and understanding to enable them to take advantage of government programs and resources.

The objective for this program is to provide an opportunity for representatives from American Indian tribes, Alaskan Native tribes or villages, and Native Hawaiian communities to learn about the National Library of Medicine, the National Network of Libraries of Medicine, and successful information projects currently underway. This project will not only provide training in the use of information resources, instruction in managing information outreach projects, information about potential opportunities, but most importantly, connection with people and programs that might provide support and assistance in the future.

3.2.3.1 Action Plan
  • Plan curriculum for internship
  • Identify first participants
  • Conduct internship
  • Continue to monitor and assess progress
  • Adjust curriculum based upon feedback
  • Identify methods and criteria for selecting new interns
3.2.3.2 Performance Measures
  • Attendance at scheduled sessions
  • Positive feedback from interactions
3.2.3.3 Outcome Measures
  • Successful project proposal for NLM funding
  • Successful local projects

Area of Emphasis 3.3 Conduct and Support Informatics Research

Objective 3.3.1 Genetics Home Reference (GHR): Conduct studies of users of health resources on the Internet to assess their information needs and use patterns.

3.3.1.1 Action Plan

The Lister Hill National Center for Biomedical Communications (LHNCBC) at NLM has created and is continually expanding, improving and updating The Genetics Home Reference (GHR), a web site designed to help members of the public to understand genetic conditions and the genes that cause them. The LHNCBC, in collaboration with the Genetic Alliance, conducted a survey to assess the site’s usefulness and navigation. The customer satisfaction survey was conducted with 374 persons. Since the survey did not gather information about race or ethnicity, we cannot provide statistics about the number of minority members that participated. However, the Genetic Alliance is the largest genetics coalition representing more than 600 affiliated organizations and through them millions of members, some of which are members of minority populations.

3.3.1.2 Performance Measures
  • Analyzed results of the survey.
3.3.1.3 Outcome Measures
  • Improve the usability, organization and navigation of the site for consumers.

Objective 3.3.2 Conduct health literacy research

3.3.2.1 Action Plan

LHNCBC conducts readability and health literacy research to develop metrics to match consumers with appropriate health text for various tasks. Starting with readability formulas as a baseline approach, the project will explore and incorporate various linguistic and non-linguistic (e.g., graphical) factors from documents, reader factors (e.g., health and general literacy), and contextual/task-oriented goals (e.g., instructional vs. informational tasks). The goal is to develop, evaluate, and validate algorithmic approaches to predicting accessibility of documents for various consumer audiences for different tasks.

3.3.2.2 Performance Measures
  • Readability Metrics.
3.3.2.3 Outcome Measures
  • Improved readability and understanding of consumer health Web sites.

Objective 3.3.3 Develop an automated system for machine translation‑based cross‑language information retrieval

3.3.3.1 Action Plan

Research on developing an automated system for helping Spanish‑speakers use machine translation and natural language processing technologies. A native Spanish‑speaking consultant with a Ph.D. in linguistics and extensive experience in machine translation of medical texts is leading this initiative.

3.3.3.2 Performance Measures

Promising results of an initial cross‑language information retrieval study to be presented at national and international conferences. Next phase: explore retrieval of Spanish‑language protocol record abstracts in ClinicalTrials.gov.

3.3.3.3 Outcome Measures

It is hoped that further research in this area will lead to improved health information access by Hispanics.