Using Participatory Workshops to Facilitate IBD Patients’ Involvement in Digital Self-help Tool Development – a Qualitative Exploration

Introduction:
In health psychology, and more specifically in chronic disease management, new technologies bring opportunities and challenges for patients and healthcare providers. Inflammatory Bowel Disease (IBD) is a chronic condition requiring collaboration among patients, practitioners, and researchers for better outcomes. However, a lack of systematic integration exists despite the availability of digital tools and online resources for IBD patients.
Goals and Methods:
This study aims to bridge this gap by developing the basic characteristics of a digital self-help tool adapted to the specific needs and habits of individuals with IBD. Using participatory workshops, where IBD patients collaborate with health psychology researchers, this ongoing research initiative applies qualitative explorations. During the workshops, participants have the opportunity to learn and interpret the findings of a preceding quantitative study phase and work out novel insights through focus group interviews.
Results:
At the conference, we will present an overview of the study, reflecting on our initial experiences. We will share insights gathered from the process, including the development of the study plan, strategies to deconstruct power distance, and methods to create safe spaces for patient empowerment and creativity. Preliminary memos and team interpretations will also be shared, offering a glimpse into the evolving research.
Conclusions:
This research may underscore the need for higher patient involvement in health psychology studies. The participatory workshop methodology emerges as a powerful tool, providing essential feedback for both research and practice development. The collaborative environment created in these workshops provides a strong example of how a more collaborative relationship between patients and healthcare providers is possible. This cooperative approach could also be integrated as a fundamental feature of the planned digital self-help tool, fostering enhanced patient engagement and ultimately improving healthcare outcomes.