Empowering Women through Self-determined Tracking and Self-initiated Sharing of Health Data with Medical Professionals

Digital self-tracking presents new opportunities for understanding women’s health, but also poses challenges around control, trust, and transparency. Although health data is often labeled “personal”, users often have little agency over its management or sharing. This is especially critical for reproductive health data, which is intimate, emotionally charged, and shaped by structural inequalities. In this work, we investigate how to design for agency over data in menstrual tracking. We present “emmie.”, developed with a User-centered Design approach and built on a Gaia-X compliant infrastructure. The app combines self-determined tracking with self-initiated data sharing through a configurable “Persona” mechanism. To examine how users experience these interaction mechanisms, we conducted contextual interviews with healthcare professionals (N=4) and a qualitative study (N=20). Our findings show how agency becomes fragile at moments of data handover and derive design guidelines for enabling transparent, revisable, and trustworthy data interactions in intimate health contexts.