Participatory Evidencing and Relational Autonomy: Co-Informing Design for Bipolar Disorder Self-Management Tools

Abstract

Digital phenotyping promises objective, continuous symptom monitoring and early intervention for mental health conditions. However, how these technologies fit within the practices of people who already manage their mental health remains underexplored. People living with bipolar disorder, who proactively engage in self-management practices, appear to be a compelling case for these tools. Yet despite these people’s rich situated knowledge about tracking practices, they are largely treated as objects of quantitative clinical studies rather than equal epistemic partners. For this study, we developed a three-phase design-led qualitative inquiry including seafaring metaphor-based exploration, experiential tracking, and guided design exercises to investigate the needs, preferences, and self-expertise of three people diagnosed with bipolar disorder in the Netherlands and Belgium. Our conversations revealed how participants adapt existing "record-keeping" systems, navigate choice and autonomy across changing mental states, and involve care networks in ongoing practices of evidencing. This research contributes to emerging HCI scholarship on digital psychiatry tools grounded in lived experience.