The Hormonal Effect (T.H.E) project - Co-design of a digital data collection tool to capture lived experience of hormonal contraception

Millions of women take hormonal contraception each year, yet no systematic tool exists to collect their real-world accounts of side effects, leaving doctors and researchers reliant on limited clinical trial data. This matters because the absence of real-world evidence fuels distrust and misinformation about hormonal contraception, particularly among Black and ethnically diverse women and those living in poverty, who are already underrepresented in mainstream research. Without reliable self-reported data, healthcare providers cannot offer personalised advice, and policymakers lack the evidence needed to address disparities in contraceptive care. If successful, the project will produce a co-designed digital data collection tool—built by and for the women most affected—that captures lived experiences of hormonal contraception. This could transform how side effects are documented, enabling more accurate risk communication, better-informed prescribing, and a shift away from one-size-fits-all contraceptive guidance. The tool itself could become a model for gathering patient-reported outcomes in other areas of women’s health where data gaps persist. The project does not aim to test a new drug or device; it addresses an infrastructure problem—how to systematically capture what patients actually experience, so that future research and clinical practice are grounded in reality rather than assumptions.