The Invisible Data: Mapping the Perimenopausal Data Gap in Women's Health

Perimenopause is a midlife women’s health issue which impacts millions of women worldwide, yet it remains underdiagnosed and poorly represented in clinical research and health technologies. This study examines how perimenopausal experiences are articulated, interpreted, and supported within digital communities by utilizing user-generated discussions from the Reddit forum ‘r/perimenopause’. Grounding this research in human centered design methods, feminist HCI principles, and narrative data visualization techniques, helps ensure that lived experiences of women, which are deeply personal and historically underrepresented are centered rather than marginalized within digital health technologies. Together, these approaches address issues of equity and representation while translating complex qualitative experiences into empathetic, meaningful design solutions. Using an iterative inductive coding process, my research identifies underlying themes and patterns related to physical, psychological, and emotional symptoms; information seeking behaviors; coping mechanisms; and experiences of validation and frustration within healthcare systems. A summative content analysis was conducted on 1000 posts and 39,698 comments dated between August 2023 and June 2025, providing a large-scale qualitative dataset for thematic analysis. Findings show the wide range of perimenopausal symptoms and underscore the role of online forums in helping women make sense of their experiences together. To explore complementary methods of analyzing large corpuses of qualitative data, a GPT-4 classifier was trained on hand annotated data to analyze symptoms with results indicating the need for further evaluation of this approach. Finally, these insights are disseminated through narrative driven visualizations designed to support both analytical interpretation and intuitive understanding. The findings aim to reduce data gaps by translating lived perimenopausal experiences into insights that inform empathetic digital health tools, support symptom management, and advance human-centered approaches in HCI.