Missing from the data, missing from the design: feminist co-design for equitable hormonal contraception symptom tracking

Introduction: Hormonal contraception is used by millions globally, yet side effects remain poorly understood and underrepresented in clinical research and digital health tools. The femtech sector has largely failed to serve marginalised communities, including ethnic minority groups, neurodivergent individuals, and those with lived experience of mental health challenges. This study explored these diverse perspectives through the co-design of T.H.E (The Hormone Effect) app, a digital tool for collecting data on hormonal contraception side effects, to ensure it serves these populations and enables the generation of more diverse and representative datasets.

Methods: Five co-design workshops were conducted in South Yorkshire, UK (May–June 2025), engaging 24 participants across five community groups: a Muslim women's group, a Muslim mums’ group, a neurodiversity support group, women with lived experience of mental health challenges, and university students. Participants reviewed a low-fidelity prototype of T.H.E app alongside existing cycle-tracking apps, engaging in facilitated discussion and annotation. Data was analysed using deductive qualitative content analysis.

Results: Five themes emerged. Participants called for flexible, inclusive, and trauma-informed data collection, raising concerns about fixed identity categories, clinical language, and the potential harms of existing mental health questionnaires. Trust and transparency were central, with significant concern about data commercialisation and privacy, particularly regarding abortion and pregnancy loss. Language and visual design were identified as key barriers and enablers of engagement. Participants also advocated strongly for reciprocal value through meaningful data visualisation and culturally relevant health information.

Discussion: Women's health data collection is an embodied, emotionally experienced, and culturally situated practice. Moving beyond extractive approaches toward transparent, trauma-informed, and user-centred design is essential for equitable digital health technology. Future work should prioritise iterative development of T.H.E app and its integration into clinical pathways to address persistent data gaps in hormonal contraception research.