Embodied Data: Gleaning Narratives of Living with Chronic Gut Diseases to Guide the Design Process

Designing for individuals with chronic diseases requires a deep understanding of their lived experiences, as these provide valuable insights into the complexities of living with such conditions. This paper highlights the importance of leveraging the experiential knowledge of those impacted, which emerges from their bodily experiences. Such knowledge constitutes lived narratives that are considered embodied data in this paper. These embodied narratives serve as a rich source of inspiration, enabling designers to develop meaningful processes and solutions that better support people. In this paper, I specifically discuss how embracing ambiguity in the research direction allows designers to co-create a research agenda by learning from the embodied data of the people they aim to design for. To illustrate this approach, I introduce a workshop titled “Eliciting Lived Narratives of Living with Chronic Gut Diseases,” which marks the initial phase of a larger research project focused on enhancing the well-being of individuals with Chronic Gut Diseases (CGD). Rather than pursuing a predefined research path, this project welcomes uncertainty, using the workshop to identify struggles and themes central to living with CGD. These insights help shape the direction of the research agenda. By demonstrating methods for eliciting lived narratives and integrating embodied data into the design process, the workshop exemplifies how participatory approaches can drive the co-creation of meaningful research directions and design outcomes.