Environmental Health Information Partnership (EnHIP): Strengthening the Capacity of Minority Serving Institutions.

The U.S. National Library of Medicine's (NLM) Environmental Health Information Partnership (EnHIP) collaborates with Historically Black Colleges and Universities (HBCUs) and other minority-serving academic institutions to enhance their capacity to reduce health disparities through the access, use, and delivery of environmental health information on their campuses and in their communities. The partnership began in 1991 as the Toxicology Information Outreach Panel (TIOP) pilot project, and through successive iterations it is NLM's longest running outreach activity. EnHIP's continued relevance today as an information outreach and training program testifies to the prescience of NLM director, Donald A.B. Lindberg M.D's initial support for the program. Dr. Lindberg's seeing to its continued success to benefit participating institutions and help achieve the societal goals of environmental justice serve as well to benefit NLM by increasing its visibility, and use of its resources in the classroom, for research, and in community outreach. NLM envisions an expanding role for EnHIP in advancing health equity as the impact of environmental exposure, climate change, and increasing zoonotic diseases disproportionately impact their communities.

HIV/AIDS Community Information Outreach Program (ACIOP): A Landmark NIH Conference and an Enduring NLM Role in Meeting the Affected Community's Need for Information Access.

In June 1993, the National Library of Medicine (NLM) joined with the National Institutes of Health's (NIH) Office of AIDS Research (OAR), and the National Institute of Allergy and Infectious Diseases (NIAID) to host a conference at a pivotal time in the HIV/AIDS epidemic to understand better the information needs of five major constituency groups: clinical researchers; clinical providers; news media and the public; patients; and the affected community. NLM's director, Donald A.B. Lindberg M.D., and staff sought to identify new program possibilities benefitting from the input of current and potential users of the Library's information services. Conference recommendations led to a key NLM policy change providing cost-free access to all AIDS data, and the establishment of the HIV/AIDS Community Information Outreach Program (ACIOP), which enabled new partnerships with local community-based organizations serving the affected community. Uniquely funded and long running, more than 300 ACIOP projects have been supported to-date. These projects have improved awareness and use of national HIV/AIDS information resources; enhanced information seeking skills; developed locally generated information resources; and enhanced the capacity of community-based organizations to use new information and computer technologies providing access to essential information resources and services.

Environmental Health Information Partnership (EnHIP): Strengthening the capacity of minority serving institutions.

The U.S. National Library of Medicine's (NLM) Environmental Health Information Partnership (EnHIP) collaborates with Historically Black Colleges and Universities (HBCUs) and other minority-serving academic institutions to enhance their capacity to reduce health disparities through the access, use, and delivery of environmental health information on their campuses and in their communities. The partnership began in 1991 as the Toxicology Information Outreach Panel (TIOP) pilot project, and through successive iterations it is NLM's longest running outreach activity. EnHIP's continued relevance today as an information outreach and training program testifies to the prescience of NLM director, Donald A.B. Lindberg M.D's initial support for the program. Dr. Lindberg's seeing to its continued success to benefit participating institutions and help achieve the societal goals of environmental justice serve as well to benefit NLM by increasing its visibility, and use of its resources in the classroom, for research, and in community outreach. NLM envisions an expanding role for EnHIP in advancing health equity as the impact of environmental exposure, climate change, and increasing zoonotic diseases disproportionately impact their communities.

HIV/AIDS community information outreach program (ACIOP): A landmark NIH conference and an enduring NLM role in meeting the affected community's need for information access.

In June 1993, the National Library of Medicine (NLM) joined with the National Institutes of Health's (NIH) Office of AIDS Research (OAR), and the National Institute of Allergy and Infectious Diseases (NIAID) to host a conference at a pivotal time in the HIV/AIDS epidemic to understand better the information needs of five major constituency groups: clinical researchers; clinical providers; news media and the public; patients; and the affected community. NLM's director, Donald A.B. Lindberg M.D., and staff sought to identify new program possibilities benefitting from the input of current and potential users of the Library's information services. Conference recommendations led to a key NLM policy change providing cost-free access to all AIDS data, and the establishment of the HIV/AIDS community information outreach program (ACIOP), which enabled new partnerships with local community-based organizations serving the affected community. Uniquely funded and long running, more than 300 ACIOP projects have been supported to-date. These projects have improved awareness and use of national HIV/AIDS information resources; enhanced information seeking skills; developed locally generated information resources; and enhanced the capacity of community-based organizations to use new information and computer technologies providing access to essential information resources and services.

Trends in HIV Terminology: Text Mining and Data Visualization Assessment of International AIDS Conference Abstracts Over 25 Years.

BACKGROUND: The language encompassing health conditions can also influence behaviors that affect health outcomes. Few published quantitative studies have been conducted that evaluate HIV-related terminology changes over time. To expand this research, this study included an analysis of a dataset of abstracts presented at the International AIDS Conference (IAC) from 1989 to 2014. These abstracts reflect the global response to HIV over 25 years. Two powerful methodologies were used to evaluate the dataset: text mining to convert the unstructured information into structured data for analysis and data visualization to represent the data visually to assess trends. OBJECTIVE: The purpose of this project was to evaluate the evolving use of HIV-related language in abstracts presented at the IAC from 1989 to 2014. METHODS: Over 80,000 abstracts were obtained from the International AIDS Society and imported into a Microsoft SQL Server database for data processing and text mining analyses. A text mining module within the KNIME Analytics Platform, an open source software, was then used to mine the partially processed data to create a terminology corpus of key HIV terms. Subject matter experts grouped the terms into categories. Tableau, a data visualization software, was used to visualize the frequency metrics associated with the terms as line graphs and word clouds. The visualized dashboards were reviewed to discern changes in terminology use across IAC years. RESULTS: The major findings identify trends in HIV-related terminology over 25 years. The term "AIDS epidemic" was dominantly used from 1989 to 1991 and then declined in use. In contrast, use of the term "HIV epidemic" increased through 2014. Beginning in the mid-1990s, the term "treatment experienced" appeared with increasing frequency in the abstracts. Use of terms identifying individuals as "carriers or victims" of HIV rarely appeared after 2008. Use of the terms "HIV positive" and "HIV infected" peaked in the early-1990s and then declined in use. The terms "men who have sex with men" and "MSM" were rarely used until 1994; subsequently, use of these terms increased through 2014. The term "sex worker" steadily increased in frequency throughout conference years, whereas the term "prostitute" decreased over time. CONCLUSIONS: The results of this study highlight changes in HIV terminology use over 25 years, including the addition, disappearance, and changing use of terms that reflect advances in HIV research and medical practice and destigmatization of the disease. Coupled with findings from related quantitative research, HIV-related terminology recommendations based on results of this study are included. Adoption of these recommendations will further efforts to use less stigmatizing language and facilitate effective communication between health professionals and people affected by HIV.

Evaluation of a health sciences internship for Latino and Native American library students.

PURPOSE: This paper presents a qualitative evaluation of a graduate-level internship for Latino and Native American library science students or students who are interested in serving those populations. METHODS: The authors analyzed semi-structured interviews with thirteen internship program graduates or participants. RESULTS: The analysis suggests that the program increased participants' interest in health sciences librarianship and led to improved career opportunities, both in health sciences libraries and other libraries with health information programming. It also highlights specific factors that are likely to contribute to the strength of career pipeline programs aiming to bring Latino and Native American students and students who are interested in serving those communities into health librarianship. CONCLUSIONS: Exposing graduate-level interns to a broad range of health sciences librarianship tasks, including outreach to Latino and Native American communities and formal mentorship, is likely to maximize interns' interests in both health sciences librarianship and service to these communities.

Enhancing the Capacity of Community Organizations to Evaluate HIV/AIDS Information Outreach: A Pilot Experiment in Expert Consultation.

The National Library of Medicine's AIDS Community Information Outreach Program (ACIOP) supports and enables access to health information on the Internet by community-based organizations. A technical assistance (TA) model was developed to enhance the capacity of ACIOP awardees to plan, evaluate, and report the results of their funded projects. This consisted of individual Consultation offered by an experienced evaluator to advise on the suitability of proposed project plans and objectives, improve measurement analytics, assist in problem resolution and outcomes reporting, and identify other improvement possibilities. Group webinars and a moderated blog for the exchange of project-specific information were also offered. Structured data collections in the form of reports, online surveys, and key informant telephone interviews provided qualitative feedback on project progress, satisfaction with the TA, and the perceived impact of the interventions on evaluation capacity building. The Model was implemented in the 2013 funding cycle with seven organizations, and the level of reported satisfaction was uniformly high. One-on-one TA was requested by four awardee organizations, and was determined to have made a meaningful difference with three. Participation in the webinars was mandatory and high overall; and was deemed to be a useful means for delivering evaluation information. In subsequent funding cycles, submission of a Logic Model will be required of awardees as a new model intervention in the expectation that it will produce stronger proposals, and enable the evaluation consultant to identify earlier intervention opportunities leading to project improvements and evaluation capacity enhancements.

Harnessing health information to foster disadvantaged teens' community engagement, leadership skills, and career plans: a qualitative evaluation of the Teen Health Leadership Program.

This paper describes a qualitative evaluation of a small-scale program aiming to improve health information literacy, leadership skills, and interest in health careers among high school students in a low-income, primarily minority community. Graduates participated in semi-structured interviews, transcripts of which were coded with a combination of objectives-driven and data-driven categories. The program had a positive impact on the participants' health information competency, leadership skills, academic orientation, and interest in health careers. Program enablers included a supportive network of adults, novel experiences, and strong mentorship. The study suggests that health information can provide a powerful context for enabling disadvantaged students' community engagement and academic success.

Empowering Patients and Community Online: Evaluation of the AIDS Community Information Outreach Program.

The AIDS Community Information Outreach Program (ACIOP) was created in 1994 to assist the affected community in utilizing electronic HIV/AIDS information resources. Nearly 300 competitive awards have been made to mostly community-based organizations. A formal evaluation was undertaken to determine the performance and impact of the ACIOP. A mixed methods design combined quantitative abstractions and summarization of 47 awardee final reports from 44 organizations, and qualitative telephone interviews with 17 individuals representing 20 projects. Findings revealed that project objectives were mostly met; high-risk populations were reached; low resource organizations were funded; community partnerships were significant; projects built on existing efforts; information resources and training were tailored to local needs; and most projects overcame barriers experienced. Needed modifications centered on: 1) enhancing evaluation capacity at the individual project level and 2) revising project reporting requirements to increase the amount of information available to assess the ACIOP; both have been implemented.

NLM Workshop Marks 20 Years of Community Outreach and Capacity Building in HIV/AIDS.

The National Library of Medicine's (NLM) AIDS Community Information Outreach Program (ACIOP) was launched in 1994 to provide the HIV/AIDS affected community with access to vital health information resources increasingly becoming available on the Internet. Three hundred awards have been made mostly to community-based organizations. An evaluation in 2012 found that most program objectives are being met; a principal recommendation going forward was that NLM seek to enhance the capacity of community-based awardees to conduct evaluations of their own projects. This article reports on a workshop whose invitees were drawn from AIDS serving organizations, along with scientists, clinicians, and information technologists, to review the evaluation findings and recommendations. They considered alternatives for improving awardees' evaluation capabilities with the help of expert consultation, identified additional steps that could be taken to make individual project results more transparent and sharable, and looked at external influences ranging from mobile health devices to the latest HIV/AIDS scientific research findings that could be used to align future awards with unmet needs in the community. The paper identifies efforts subsequently made by ACIOP managers to prioritize and operationalize guidance from the evaluation and the workshop, and discusses the benefits of community engagement.

Evaluation of health information outreach: theory, practice, and future direction.

OBJECTIVE: Convincing evidence of the effectiveness of health information outreach projects is essential to ensure their continuity. This paper reviews the current state of health information outreach evaluation, characterizes strengths and weaknesses in projects' ability to measure their impact, and assesses enablers of and barriers to projects' success. It also relates the projects' characteristics to evaluation practices. The paper then makes recommendations for strengthening evaluation. METHODS: Upon conducting a literature search, the authors identified thirty-three articles describing consumer health information outreach programs, published between 2000 and 2010. We then analyzed the outreach projects with respect to their goals and characteristics, evaluation methods and measures, and reported outcomes. RESULTS: The results uncovered great variation in the quality of evaluation methods, outcome measures, and reporting. Outcome measures did not always match project objectives; few quantitative measures employed pretests or reported statistical significance; and institutional change was not measured in a structured way. While papers reported successful outcomes, greater rigor in measuring and documenting outcomes would be helpful. CONCLUSION: Planning outcome evaluation carefully and conducting research into mediators between health information and behavior will strengthen the ability to identify best practices and develop a theoretical framework and practical guidance for health information outreach.

Teaching Environmental Health Science for Informed Citizenship in the Science Classroom and Afterschool Clubs.

In the era of growing concerns about human-induced climate change and sustainable development, it is important for the schools to prepare students for meaningful engagement with environmental policies that will determine the future of our society. To do this, educators need to face a number of challenges. These include deciding on the science knowledge and skills needed for informed citizenship, identifying teaching practices for fostering such knowledge and skills, and finding ways to implement new practices into the tightly packed existing curriculum. This paper describes two collaborative efforts between the U.S. National Library of Medicine (NLM) and University of Maryland College of Education that attempt to meet these challenges. The focus of both projects is on helping students develop information seeking and evaluation and argumentation skills, and applying them to complex socio-scientific issues that have bearing on students' daily lives. The first effort involves co-designing an afterschool environmental health club curriculum with an interdisciplinary team of middle school teachers. The second effort is the development and implementation of a week-long school drinking water quality debate activity in a high school environmental science classroom. Both projects center on Tox Town, an NLM web resource that introduces students to environmental health issues in everyday environments. The paper describes successes and challenges of environmental health curriculum development, including teachers' and researchers' perception of contextual constraints in the club and classroom setting, tensions inherent in co-design, and students' experience with socio-scientific argumentation.

Educating Young People about Environmental Health for Informed Social Action.

Whereas environmental health education is rapidly becoming a global priority, it still receives little attention in schools. This paper describes a U.S. National Library of Medicine program, aiming to support environmental health education in grades 6-12 in U.S. schools. The program has four components: (1) developing reliable online resources that provide quality environmental health information; (2) creating lesson plans that integrate our resources into the classroom and extracurricular activities; (3) engaging teachers by inviting collaborations and promoting our resources and activities; and (4) conducting educational research that provides a foundation for the other components. The paper describes specific educational resources and activities and grounds them in learning theories from the fields of cognitive psychology and science education.

HIV/AIDS information outreach: a community-based approach.

OBJECTIVE: The paper provides an overview of the National Library of Medicine's (NLM's) AIDS Community Information Outreach Program during the years 1994 to 2005, discusses the impact of previously funded projects, and explores future implications for HIV/AIDS information outreach to communities in need. METHODS: A qualitative assessment was conducted to provide information on the impact of projects funded by the AIDS Community Information Outreach Program during fiscal year 2002. Interviews were conducted and final reports were analyzed, resulting in themes based on roles and responsibilities of participants and the impact of the projects in the communities. RESULTS: Results from the assessment suggest that access to HIV/AIDS information led to improved communication between patients and their health care providers and encouraged better health care decision making. Feedback from reports and interviews included examples of impact such as an increase in services provided to communities, national and global recognition of HIV/AIDS services, sustainability of projects, and improved communication. CONCLUSION: Community-based health information outreach projects may empower the HIV/AIDS community to become more involved in health care and improve communication with providers. NLM will continue to promote the AIDS Community Information Outreach Program to encourage community organizations to design local projects for their specific communities.

Addressing health disparities and environmental justice: the National Library of Medicine's Environmental Health Information Outreach Program.

PURPOSE: Disparities in health between minority and majority populations have become a topic of high interest in the health care and information communities. This paper describes the National Library of Medicine's (NLM's) oldest outreach program to a minority population, a project that has been going on for over fifteen years. SETTING/PARTICIPANTS/RESOURCES: The overview is based on internal documentation and reports, interviews, personal communications, and project reports. BRIEF DESCRIPTION: This is a historical overview of the Environmental Health Information Outreach Program, from its beginnings in 1991 as the Toxicology Information Outreach Project. The initial collaboration began with nine historically black colleges and universities (HBCUs) that had graduate programs in biomedicine. The current program includes representation from HBCUs, institutions serving Hispanic students, and tribal colleges. In addition to working with these institutions to promote the use of and access to electronic health information and related technology, this program brings attention to scientific research related to health issues that disproportionately affect minorities. RESULTS/OUTCOME: The program expanded due to its perceived success by the initial participants and NLM's management. Not only have faculty, staff, and students at the participating institutions received training in using NLM's toxicology, environmental health, and other electronic resources, but the participants ascribe other successes to their collaboration with NLM.

The National Library of Medicine's Native American outreach portfolio: a descriptive overview.

OBJECTIVES: This paper provides the most complete accounting of the National Library of Medicine's (NLM's) Native outreach since 1995, when there were only a few scattered projects. METHOD: The descriptive overview is based on a review of project reports, inventories, and databases and input from the NLM Specialized Information Services Division, National Network Office of the Library Operations Division, National Network of Libraries of Medicine, and Office of Health Information Programs Development of the Office of the NLM Director. The overview focuses on NLM-supported or sponsored outreach initiatives involving Native peoples: American Indians, Alaska Natives, and Native Hawaiians. RESULTS: The review of NLM's relevant activities resulted in a portfolio of projects that clustered naturally into the following areas: major multisite projects: Tribal Connections and related, Native American Information Internship Project: Sacred Root, tribal college outreach and tribal librarianship projects, collaboration with inter-tribal and national organizations, participation in Native American Powwows, Native American Listening Circle Project, Native American Health Information, and other Native American outreach projects. IMPLICATIONS: NLM's Native American Outreach reached programmatic status as of late 2004. The companion paper identifies several areas of possible new or enhanced Native outreach activities. Both papers highlight the importance of solid reporting and evaluation to optimize project results and programmatic balance and priorities.

Assessment of the National Library of Medicine's health disparities plan: a focus on Native American outreach.

OBJECTIVES: Overcoming health disparities between majority and minority populations is a significant national challenge. This paper assesses outreach to Native Americans (American Indians, Alaska Natives, and Native Hawaiians) by the National Library of Medicine (NLM). A companion paper details NLM's portfolio of Native American outreach projects. METHOD: NLM's Native American outreach is assessed in light of the presentations at a community-based health information outreach symposium and the goals set by NLM's plan to reduce health disparities. RESULTS: NLM's current portfolio of Native American outreach projects appears most advanced in meeting the goal set in area 1 of the health disparities plan, "Promote use of health information by health professionals and the public." NLM's portfolio also shows significant strength and good progress regarding area 2 of the plan, "Expand partnerships among various types of libraries and community-based organizations." The portfolio is weaker in area 3, "Conduct and support informatics research." More knowledge-building efforts would benefit NLM, the National Network of Libraries of Medicine, and Native American and community-based organizations. IMPLICATIONS: The current Native American outreach portfolio should be continued, but new approaches are needed for evaluating Native American outreach and for forging collaborations with Native American groups, approaches grounded in consultation and mutual understanding of needs and perspectives.

Community-based organizations' perspective on health information outreach: a panel discussion.

OBJECTIVE: A panel was convened to elicit guidance for librarians in initiating and implementing community-based health information outreach. PARTICIPANTS: Participants included a panel of individuals from communities or community organizations who represented the types of groups with which librarians or information specialists need to interact and an audience who represented health sciences libraries, public libraries, academic institutions, government agencies, funding agencies, and community-based organizations and could contribute to a discussion on community-based health information outreach. PROGRAM: The panel was presented with a hypothetical community setting and asked to respond to a series of questions: What do librarians need to learn about the community before they make their visits? What methods of outreach have been successful in your work? How would you implement and sustain a health information program in your community? How would health information interventions reduce racial and ethnic disparities in health? MAIN RESULTS: The panel helped to frame many of the issues that may confront librarians as they initiate information-related programs in communities. CONCLUSION: There is clear consensus on the need for librarians to make the effort to reach out into the community, to make the contacts, to seek to understand the community, to talk with leaders, and to respect the community as they promote and teach the use of health information resources. It was confirmed that librarians and libraries have an important role in diminishing health disparities by improving access to health information.

The AIDS Clinical Trials Information Service (ACTIS): a decade of providing clinical trials information.

The AIDS Clinical Trials Information Service (ACTIS) is a central resource for information about federally and privately funded HIV/AIDS clinical trials. Sponsored by four components of the U.S. Department of Health and Human Services, ACTIS has been a key part of U.S. HIV/AIDS information and education services since 1989. ACTIS offers a toll-free telephone service, through which trained information specialists can provide callers with information about AIDS clinical trials in English or Spanish, and a website that provides access to clinical trials databases and a variety of educational resources. Future priorities include the development of new resources to target diverse and underserved populations. In addition, research needs to be conducted on the use of telephone services vs. Web-based information exchange to ensure the broadest possible dissemination of up-to-date information on HIV infection and clinical trials.