Educational materials for people with HIV in web-based patient portals

Background: People living with HIV (PWH) face challenges to accessing quality information for the self-management of their health and psychosocial needs. Educational materials available in electronic patient portals could help PWH easily find appropriate information on their condition. Currently, there is a lack of published work synthesizing the type of educational materials that are available in patient portals for PWH and their formats. Given the increase in use of patient portals to support the self-management of chronic conditions like HIV, it is opportune to examine existing patient educational materials in these portals to better understand their coverage and identify any gaps.Aim: This thesis seeks to explore the current breadth and scope of educational materials for PWH in patient portals. This research will amalgamate the literature to better understand the nature of these materials including their coverage, form, and development process. Specifically, we seek to understand the health topics available to PWH, their formats in patient portals, the methods used to select or develop the material, and the involvement of PWH in these processes. Methods: A rapid scoping review was conducted on educational material for PWH available in patient portals. In accordance with PRISMA guidelines, five electronic databases were searched (on January 5th, 2024) and the search strategy was planned around three concepts including: patient portals, HIV, and patient educational materials. Data were extracted based on the objectives and then synthesized inductively using textual narrative synthesis. Results: The literature search identified 940 articles for title and abstract screening. After full-text screening, 8 articles were included, describing 8 patient portals. Five categories of health topics were identified: 1. HIV medications/treatments; 2. Lab test result explanations; 3. General health information; 4. Symptom management; and 5. Available resources. Four main categories of educational material formats were identified: 1. Explanatory text materials; 2. Visual information; 3. Links to external resources; and 4. Personalized feedback. None of the studies explicitly reported incorporating PWH input into the development of educational materials.Conclusion: This rapid scoping review reveals significant underreporting of the development processes of educational materials for PWH in patient portals. Although some information on topics and formats exists, the absence of PWH involvement in its creation limits the ability of this material to meet the diverse informational needs of PWH. Strengthening this literature can better inform the design of educational resources in patient portals to better support PWH.Aim: This thesis seeks to explore the current status of educational materials for PWH in patient portals. This research will amalgamate the literature to better understand the nature of these materials including their coverage, form, and development process. Specifically, we seek to understand the health topics available to PWH, their formats in patient portals, the methods used to select or develop the material, and the involvement of PWH in these processes. Methods: This thesis consists of a manuscript that provides a rapid scoping review of educational material for PWH found in patient portals. In accordance with PRISMA guidelines, five electronic databases were searched on January 5th, 2024 and the search strategy was planned around the concepts: patient portals, HIV, and patient educational materials. Data was extracted on reports of educational material found in patient portals and then synthesized inductively using textual narrative synthesis. Results: Following the removal of duplicates, our search identified 940 articles for title and abstract screening. After full-text screening, 9 articles were included, describing 8 patient portals. We identified 4 categories of health topics: 1. HIV medications/treatments; 2. Common lab test explanations; 3. Prompt list of questions to ask HCPs; 4. Self-care strategies. We identified 3 main categories of educational material formats: 1. Informative text materials; 2. Links to external resources; 3. Feedback after completing questionnaires. We discovered scarce reporting on the development of these materials or the involvement of PWH in this process.Conclusion: The findings from this research suggest that there is poor reporting of educational materials in patient portals. There is scarce information on what topics are available to PWH, their format, or how these resources were developed. This thesis highlights a broader gap in supporting the informational needs of PWH

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