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Co-Designing Digital Health Tools for Inflammatory Bowel Disease (IBD): Insights from a Patient-Led Peer-to-Peer Focus Group Study [PCC180]

Tuesday May 5, 2026 12:00 - 11:15 Poster Arena

Presenter: Sandra Zelinsky

Track: Poster

Inflammatory Bowel Disease (IBD), comprising Crohn’s disease and ulcerative colitis, presents complex challenges that extend beyond physical symptoms to affect emotional, social, and psychological well-being. Effective IBD management requires a person-centred approach, one that recognizes individuals as active partners in their care and values lived experiences. This study explores how people with IBD self-manage their condition, the use of digital health tools, and how their insights can guide the development of more responsive, inclusive health technology. The research was co-led by members of the IBD Patient Research Council, a multidisciplinary team including individuals living with IBD, gastroenterologist, dietician, academic researchers, and a project manager. Four Patient Research Partners (PRPs) from the council co-developed and facilitated a series of online focus groups involving adults living with IBD across Alberta, Canada. Participants shared their experiences using digital health tools, highlighting barriers, facilitators, and desired features for effective self-management. Twenty-two participants, aged 18-65, from diverse geographic and clinical backgrounds, contributed to the study. Thematic analysis of the focus group transcripts revealed 29 themes and 51 sub-themes across three domains: self-management strategies, digital platform features and content, and barriers to use. Key insights included the importance of tracking diet, stress, and symptoms; maintaining physical health; accessing peer support; and ensuring usability, privacy, and meaningful communication with healthcare providers. This study demonstrates the value of co-design and person-centred engagement in digital health research. By integrating patient voices throughout the research process, from design to dissemination, we identified actionable priorities for improving digital health tools that support holistic IBD care. These findings will inform future development of the MyIBDToolkit, a suite of digital tools to enhance communication, accessibility, and quality of life for individuals living with IBD.
Language

English

Conference

GCPCC

GCPCC Code

PCC180

Lecturers

Sandra Zelinsky Presenter

Sandra Zelinsky, Justin Mikhail, Amanda Pounder, Jessica Cromwell, Melissa Fox, Karen Wong