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Developing Patient-Centered Inflammatory Bowel Disease-Related Educational Videos Optimized for Social Media: Qualitative Research Study.

ABSTRACT: BACKGROUND:Important knowledge gaps have been identified related to the causes and symptoms of inflammatory bowel disease (IBD) and medical treatments and their side effects. Patients with IBD turn to social media to learn more about their disease. However, such information found on the web is misleading and often of low quality. OBJECTIVE:This study aims to gain an in-depth understanding of the unmet educational needs of patients with IBD and to use the resulting insights to develop a collection of freely available, evidence-based educational videos optimized for dissemination through social media. METHODS:We used design thinking, a human-centered approach, to guide our qualitative research methodology. We performed focus groups and interviews with a diverse sample of 29 patients with IBD. Data collection was performed in 3 phases (inspiration, ideation, and implementation) based on IDEO design thinking. Phase 1 offered insights into the needs of patients with IBD, whereas phases 2 and 3 involved ideation, prototyping, and video testing. A thematic analysis was performed to analyze the resulting data. RESULTS:Patients emphasized the need for educational videos that address their challenges, needs, and expectations. From the data analysis, 5 video topics and their content emerged: IBD treatments' risks and benefits; how to be a self-advocate; how to stay healthy with IBD; how to cope with IBD; and educating families, friends, and colleagues about experiences of patients with IBD. CONCLUSIONS:Design thinking offers a deep understanding and recognition of the unmet educational needs of patients with IBD; this approach informed the development of 5 evidence-based educational videos. Future research will formally test and disseminate these freely available videos through social media.

SUBMITTER: Khalil C

PROVIDER: S-EPMC7609199 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

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Developing Patient-Centered Inflammatory Bowel Disease-Related Educational Videos Optimized for Social Media: Qualitative Research Study.

Khalil Carine C Van Deen Welmoed W Dupuy Taylor T Bonthala Nirupama N Almario Christopher C Spiegel Brennan B

JMIR medical education 20201020 2

<h4>Background</h4>Important knowledge gaps have been identified related to the causes and symptoms of inflammatory bowel disease (IBD) and medical treatments and their side effects. Patients with IBD turn to social media to learn more about their disease. However, such information found on the web is misleading and often of low quality.<h4>Objective</h4>This study aims to gain an in-depth understanding of the unmet educational needs of patients with IBD and to use the resulting insights to deve ...[more]

PMID: 33079065

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Project description:BackgroundWith the rapid growth of technology and its improved accessibility globally, social media is gaining an increasingly important role in health care. Patients are frequently engaging with social media to access information, share content, and interact with others in online health communities. However, the use of social media as a stakeholder engagement strategy has been minimally explored, and effective methods for involving participants in research on the identification of patient-centered outcomes remain unknown.ObjectiveThe aim of this study was to evaluate the process of using social media to engage parents in identifying patient-centered outcomes, using acute respiratory infections in children as an example to gauge feasibility.MethodsWe conducted a process evaluation of a two-phase Web-based strategy to engage parents in research on patient-centered outcomes. In the first phase, we developed a website and study-specific Facebook and Twitter accounts to recruit parents to complete a Web-based survey identifying patient-centered outcomes. In the second phase, we used Facebook to host discussion with parents based on the survey results. The reach of social media as an engagement strategy and the characteristics of the population recruited were assessed.ResultsDuring the first phase, there were 5027 visits to the survey site, 110 participants completed the survey, 553 unique users visited the study website (675 visits), the Facebook page received 104 likes, and the Twitter account gained 52 followers over the 14-week study period. Most survey respondents identified Facebook (51.8%, 57/110) or a friend (45.5%, 50/110) as their source of referral. It was found that 70.0% (77/110) of respondents resided in Canada, in urban centers (92.7%, 102/110), and 88.2% (97/110) had a college or university degree or higher. The median year of birth was 1978 and 90.0% (99/110) were female. Most survey responses (88.2%, 97/110) were completed during the first month of the study. In the second phase, 4 parents participated in the discussion, our Facebook page gained 43 followers, and our posts reached 5866 users. Mirroring the first phase, most followers were female (79%, 34/43), between 35 and 44 years (49%, 21/43), and resided in Canada (98%, 42/43). User engagement was variable, with no clear patterns emerging in timing, topic, or type of post.ConclusionsMost participants were highly educated, urban dwelling, and female, limiting diversity and representativeness. The source of referral for most survey respondents was through Facebook or a friend, suggesting the importance of personal connections in the dissemination and uptake of information. User engagement with the Facebook-based discussion threads was inconsistent and difficult to initiate. Although there is substantial interest in the use of social media as a component of an effective patient engagement strategy, challenges regarding participant engagement, representativeness, obtaining buy-in, and resources required must be carefully considered.

Dataset Information

Developing Patient-Centered Inflammatory Bowel Disease-Related Educational Videos Optimized for Social Media: Qualitative Research Study.

Publications

Developing Patient-Centered Inflammatory Bowel Disease-Related Educational Videos Optimized for Social Media: Qualitative Research Study.

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