What is the women's health data gap?
The women’s health data gap is the distance between how much data women’s bodies generate and how little of it reaches research that could improve care. It shows up in two numbers.
The funding side: across 64 conditions studied, the six female-specific conditions that make up 14% of the women’s health burden (measured in disability-adjusted life years) received under 1% of 2019–23 research funding.
The data side: the three largest menstrual apps (Clue, Flo, Period Tracker) have been downloaded more than 250 million times, and Flo alone reports around 70 million monthly active users. The raw material for understanding the feminine cycle exists at a scale medicine has never had before.
So why doesn’t the data reach research?
Because of where it lives and how it is governed:
- It sits outside medical privacy law. Consumer cycle-tracking apps are not covered by HIPAA, so their data carries none of the guarantees that make clinical data usable in regulated research.
- Its stewardship fails basic tests. A peer-reviewed review of the 23 most popular women’s mHealth apps found 20 sharing data with third parties, with practices that do not comply with the GDPR. Data collected this way cannot ethically anchor research.
- Meanwhile, regulated data is over-locked. Institutions “err on the side of caution”, restricting sharing beyond what the law requires; in Finland, the first country to fully implement secondary-use rules, approved research permits fell an estimated 47% below projected levels in 2023.
The result: the most abundant new source of women’s health data is the least trustworthy, and the most trustworthy sources are the hardest to use.
Closing the gap without repeating the failure
The gap will not be closed by another app that hoards data, nor by regulation alone. It requires infrastructure where the data is research-grade because it is consented: each woman holds her own record, decides who accesses it and why, and can revoke that access at any time.
Health Data Safe’s Women’s Health project is building it with the FemTech ecosystem: high-quality, ethically sourced datasets on the feminine cycle, held under explicit consent on open-source infrastructure, governed by a Swiss non-profit foundation whose statutes treat health data as a common good.