JMIR Publications

ABSTRACT

Background:

Important knowledge gaps have been identified related to the causes of IBD, symptoms, medical treatments, and side-effects. IBD patients turn to social media to learn more about their disease. However, such information found online is often low-quality and misleading.

Objective:

The aim of this study was to gain an in-depth understanding of IBD patients’ unmet educational needs 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 IBD patients. Data collection was performed in three phases (inspiration, ideation, and implementation) based on IDEO design thinking. Phase 1 offered insights into IBD patients’ needs, while phases 2 and 3 involved ideation, prototyping, and testing the videos. 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. Five video topics and their content emerged from the data analysis: Learning about IBD treatments’ risks and benefits; learning how to be a self-advocate; learning how to stay healthy with IBD; learning how to cope with IBD; and educating families, friends, and colleagues about IBD patients’ experiences.

Conclusions:

Design thinking offers deep understanding and recognition of IBD patients’ unmet educational needs; this approach informed the development of five evidence-based educational videos. Future research will formally test and disseminate these freely-available videos through social media.