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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.
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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.
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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.
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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.
