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Better estimate the frequency of a disease, allow women to monitor their cycle… Data collection is essential for the development of technological solutions to “advance women’s health”, but is not without danger for users.
“Data matters for advancing health“, analyzes Audrey Tsang, the general director of Clue, a European application for monitoring the menstrual cycle, which claims 10 million users around the world.
No longer underestimate women’s health problems
“When Clue launched a decade ago, no one said the words +menstruation+ or +menopause+“, says the manager during a conference at the Vivatech technology fair, which ends on Saturday in Paris.
Gold “when we don’t talk about a subject, when we don’t measure it, we don’t know what it represents“.
The various solutions proposed for women need to be based on quantified elements, which are still insufficient today. Thus, according to a report from the McKinsey firm for the World Economic Forum in January, the lack of data on this or that female pathology, such as endometriosis, has significant consequences, whether on the management of the disease or on the investments dedicated to it.
“The problems of women’s health are systematically underestimated, with datasets that exclude or underestimate important diseases“, he describes.
As a result, women are under-represented in research and clinical trials, a phenomenon referred to as the “gender gap”.
Under these conditions, “femtech” companies – a contraction of “female” and “technology”, the term designates technologies dedicated to women – have a role to play, told AFP Juliette Mauro, entrepreneur and member of the Femtech France association.
“Startups are starting to collect women’s health data on certain under-studied pathologies, which makes it possible to complete research and accelerate“, she describes. “From the moment we show that there is a need, we have more potential investments and more capacity to create innovation: it’s a virtuous circle“.
What are the risks of sharing personal information?
Having access to large databases is also essential according to Brittany Barreto, the founder of the American market research firm FemHealth Insights. “We have preliminary data that shows Hispanic women menstruate younger, Asian women enter menopause earlier than others“, she quotes during the Vivatech show. Knowing these elements allows us to determine that “what is normal for one woman may not be normal for another“.
Another telling example: a cesarean section could prove necessary for a woman who is not sufficiently dilated during childbirth, while for another, older or of a different ethnicity, the phenomenon could turn out to be normal, explains- she said.
However, revealing personal data is not without risks. The American menstrual cycle tracking application Flo was caught by the American authorities in 2021 for having provided the personal information of its users to other companies, including Google and Facebook, without their prior consent.
“We must act responsibly“, reacts to AFP Audrey Tsang, the director of Clue. “Our customers pay for a service (…) They will never be our product, we will not sell their personal information“, she assures.
But the danger is not only the commodification of data. In an authoritarian country, or in the event of a change in legislation, such as abortion now illegal in several American states, the consequences could be even worse for users, whose sensitive data could reveal that they were pregnant, and chosen an abortion.
“We would never give someone’s data to help sue them for something we think is simply health care.“, assures Ms. Tsang, who praises for this purpose the European GDPR regulation on the processing of personal data.
“You need to know the origin of an app“, agrees Delphine Moulu, co-founder of Femtech France, also noting that European data law is more protective. The entrepreneur also encourages users to read the general conditions of the apps in detail… Even when the approach is tedious.