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.