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Speaker 1: I think it's a it's a problem that we have

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Speaker 1: become used to having free digital services and free in

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Speaker 1: quotation mark because of course we've been really paying without

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Speaker 1: private data. These days, there seems to be a smartphone

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Speaker 1: app for just about everything. One of the more popular

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Speaker 1: categories are apps that track menstrual cycles. More than a

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Speaker 1: hundred million women around the world already use them. Some

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Speaker 1: are trying to get pregnant, others are trying to avoid

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Speaker 1: getting pregnant, and many just want to better handle on

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Speaker 1: what their bodies are doing. But these free apps have

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Speaker 1: trade offs. Some use sensitive health information to place targeted ads.

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Speaker 1: The apps all need to make money, and that might

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Speaker 1: mean in a big picture sense, their main product is

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Speaker 1: actually their users data. Welcome to Prognosis, Bloomberg's podcast about

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Speaker 1: the intersection of health and technology and the unexpected places

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Speaker 1: that is taking us. I'm your host, Michelle fe Cortes.

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Speaker 1: For most of us, giving away our data is just

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Speaker 1: the deal we make when we're using a free app.

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Speaker 1: But a growing number of women are saying no, thank you,

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Speaker 1: and some are taking matters into their own hands. Bloomberg's

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Speaker 1: Naomi Kraski went to meet a group of feminist coders.

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Speaker 1: Our story starts at the Rainbow Factory, a community space

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Speaker 1: in Berlin's hot spot for startups, the Kreuzburg neighborhood. I'm

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Speaker 1: standing in the cafe at the community space. It's packed

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Speaker 1: with about two dozen people crammed around mismatched schoolroom style

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Speaker 1: tables and shares. Someone just popped open a bottle of

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Speaker 1: East Germans sparkling wine behind the bar, and they're handing

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Speaker 1: it out for free. People are here to celebrate. Everyone

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Speaker 1: stops hosting each other and settles down, turning their attention

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Speaker 1: to a project and screen. Next to that screen is

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Speaker 1: Marie cox Seek, a thirty year old sociologist and software developer.

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Speaker 1: She pulls up a slide with a grid of logos

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Speaker 1: for different period tracking apps. Don't get me wrong, I

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Speaker 1: don't think pink is a bad color. I just think

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Speaker 1: it's not the only one. And I also think flowers

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Speaker 1: or the herd, or what butterfly? Or this this very

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Speaker 1: cute girl with these big eyes. They don't really represent

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Speaker 1: represent me, They don't really represent us. Marie is one

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Speaker 1: third of the leadership team for Bloody Health, the coding

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Speaker 1: collectives that just released the first female developed open source

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Speaker 1: menstrual cycle tracker. In English, it's called DRIP. And this

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Speaker 1: is the launch party. Now after all these things, oh no,

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Speaker 1: there's like no privacy, no security, black box algorithms, Genno stereotypes.

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Speaker 1: Now this is DRIP. The seats for the project were

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Speaker 1: sewn back in when Marie got her first smartphone. It

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Speaker 1: was an Android. She was a bit of a late

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Speaker 1: adopter on the smartphone, but she knew what she wanted

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Speaker 1: to download right away. I looked into the play store

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Speaker 1: and I found a period app, um, and I just

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Speaker 1: took like the first one. Yeah, I think it was Womanlock,

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Speaker 1: which is also the icon with a pink flower on

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Speaker 1: the black screen, and it was. It was the first

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Speaker 1: app that I've seen. And the very same day, I

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Speaker 1: met with a friend of mine and I was very

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Speaker 1: excited and I told her, oh my god, I just

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Speaker 1: found this cool period app. It's so useful. I love it.

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Speaker 1: If you have ever had a period, you know why.

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Speaker 1: Marie was so happy at first when she found that app.

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Speaker 1: Periods can turn up at the most annoying times. They

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Speaker 1: can ruin your sheets and your Tinder dates. But period

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Speaker 1: apps promised to do more than just help you keep

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Speaker 1: act of bleeding. The broader pitch is that if you

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Speaker 1: give the app and of details, you can get a

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Speaker 1: heads up on all the others, sometimes frustrating changes that

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Speaker 1: come with your cycle. Why am I feeling depressed? What

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Speaker 1: the heck is going on with my digestion? Could I

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Speaker 1: be pregnant? The desire to connect the dots between the

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Speaker 1: period and everything else has helped make the apps so popular.

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Speaker 1: They're consistently in the top ten most downloaded in the

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Speaker 1: app Store. Just about every commercial period app lets you

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Speaker 1: do more than just click a calendar day so you

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Speaker 1: remember when your last one happened. They also make predictions

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Speaker 1: about when your next period will come. They let you

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Speaker 1: track everything from sex and boozy nights out to ovulation tests,

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Speaker 1: vaginal discharge, and resting body temperature. But apps don't necessarily

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Speaker 1: have to meet the privacy standards of say, doctor or

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Speaker 1: hospital records. In fact, as one of Marie's friends told her,

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Speaker 1: the commercial apps can use your data for plenty of

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Speaker 1: things that do not have anything to do with keeping

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Speaker 1: track of your period. This first looked at me. She

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Speaker 1: was a very close friend, so she looked at me

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Speaker 1: and said, like, Marie, have you read the privacy policy?

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Speaker 1: Of this app, and um, I was a bit annoyed

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Speaker 1: at her because she kind of took away my joy

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Speaker 1: in that moment um. But the following day I deleted

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Speaker 1: the app. All of that data can be used for

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Speaker 1: the same type of business that Facebook, Instagram and other

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Speaker 1: major apps use it for. Facebook is already controversial, but

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Speaker 1: here we're talking about even more personal data than what

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Speaker 1: most people share with social media. Joanna Baron, a Brazilian

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Speaker 1: researcher and digital rights activists who leads the group Coding Rights, explains,

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Speaker 1: so it's a lot, a lot, a lot of information

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Speaker 1: that is collected and the information that you get back

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Speaker 1: it's a when's your period and when's your fertile moment.

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Speaker 1: It doesn't need to ask all those questions to have

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Speaker 1: this outcome as an information. So of course this is

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Speaker 1: going somewhere else. And then if you go and look

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Speaker 1: at the terms of services, they say we might give

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Speaker 1: it to the data to third parties for advertisement purposes

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Speaker 1: and for whatever purpose that's not the purpose of the app.

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Speaker 1: Joanna's group did a study of period apps called Menstrue

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Speaker 1: Apps how to turn your period into money for others.

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Speaker 1: They found that information users give the apps can be

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Speaker 1: shared with third parties, including social media platforms, marketing agencies,

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Speaker 1: research institutes, employers, and Google Analytics. Flow, the biggest period

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Speaker 1: app in the US, has collected more than thirteen billion

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Speaker 1: data points about its users. Flow says the day helps

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Speaker 1: women monitor irregular periods and has helped a lot of

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Speaker 1: its users get pregnant. The app, based out of Mintsk

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Speaker 1: in Belarus, got into hot water recently over sharing some

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Speaker 1: user data with Facebook. After an uproar, the company said

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Speaker 1: it was only using Facebook analytics to improve the user

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Speaker 1: experience and that it would stop. But in China, where

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Speaker 1: the biggest period apps in the world are based, companies

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Speaker 1: have gone much further. Diema, one of the market leaders there,

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Speaker 1: said it crunches its users data to find out whether

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Speaker 1: to show them ads for tampons or ads for ovulation kits. Still,

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Speaker 1: Joanna's group found that when it comes to privacy policies,

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Speaker 1: not all commercial period apps are created equal. They cited Clue,

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Speaker 1: a Berlin based period app that's especially popular in Europe,

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Speaker 1: as an example of a clear privacy policy. Clue also

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Speaker 1: lets you store your health tracking data on your phone

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Speaker 1: without sharing it with the company, as long as you

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Speaker 1: do not set up a user account. I wanted to

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Speaker 1: get an industry perspective on this open source backlash against

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Speaker 1: commercial period apps, so I went to visit Clue CEO.

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Speaker 1: I'd a ten. I never started this company because of

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Speaker 1: wanted to build a business. I wanted to solve a problem,

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Speaker 1: and so I think there are definitely many nasty ways

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Speaker 1: that you can be commercial in this industry, and that

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Speaker 1: is happening. I do understand their sentiment. I still believe

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Speaker 1: that there must be a different way. I think it's

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Speaker 1: an it's the problem that we have become used to

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Speaker 1: having free digital services and free incuptation mark because of course,

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Speaker 1: within really paying without private data. Cluse terms of service

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Speaker 1: allow user data to be shared with academic researchers, and

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Speaker 1: it doesn't explicitly rule out commercial use. However, i'd just

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Speaker 1: said she does not want to run targeted at or

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Speaker 1: sell user data. But Clue has thirty million dollars in

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Speaker 1: capital from investors, and she's wrestling right now with how

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Speaker 1: to turn her period app into a sustainable business. She

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Speaker 1: wouldn't talk about exactly how that might work, except to

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Speaker 1: say that she has three concrete ideas that she's working

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Speaker 1: on right now. Clue has already experimented with a subscription model,

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Speaker 1: charging women about one dollar a month for more data analysis.

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Speaker 1: Marie started seriously thinking about period apps after doing a

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Speaker 1: study of Clue. She was working on her master's thesis

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Speaker 1: and sociology and early and she interviewed ten women about

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Speaker 1: how they used the app and what they were getting

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Speaker 1: out of it. Some more bisexual, some heterosexual, Some wanted

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Speaker 1: to get pregnant, and some did not. They were all

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Speaker 1: getting something different out of the app. At some point,

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Speaker 1: I had like nine different period apps on my phone

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Speaker 1: and I was trying to track see how different they are.

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Speaker 1: And that's where we get back to the idea of

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Speaker 1: a black box. Murray had all these different apps on

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Speaker 1: her phone, but she could not see into any of them.

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Speaker 1: She didn't have access to any of the code. Even Clue,

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Speaker 1: with it's easy to understand privacy policy didn't let her

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Speaker 1: see what was going on behind the screens. If we

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Speaker 1: use technology, um and we think it's useful and we

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Speaker 1: think it makes her life easier, but at the same

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Speaker 1: time we can't look behind the scenes, We can't understand

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Speaker 1: what is actually happening with the data we generate. What

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Speaker 1: is the code actually about? It became more and more

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Speaker 1: important to me UM to uh, to rely on open

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Speaker 1: source software. UM and so I was in a way

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Speaker 1: like unsatisfied with period apps and with I think with

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Speaker 1: health trekking apps in general. By September teen, Marie was

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Speaker 1: toying with the idea of writing her own open source

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Speaker 1: period app. She had already linked up with one potential collaborator,

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Speaker 1: a thirty year old mathematician named Tina Baumant. Marie turned

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Speaker 1: to Twitter to see if anyone else was interested in

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Speaker 1: making it a more serious project. She tweeted in German

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Speaker 1: something along the lines of who wants to fiddle around

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Speaker 1: with an open source menstrual cycle app? With me? She

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Speaker 1: included a gift of a little girl with a lot

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Speaker 1: of attitude. Yeah, it's just a gift showing UM a

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Speaker 1: small girl UM throwing very confidently giving away three tampons.

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Speaker 1: I guess I just thought, in this moment, Okay, let's

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Speaker 1: just give it a try, and let's see what happens

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Speaker 1: if I tweet about it, UM and I got um

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Speaker 1: quite a few retweets, quite a few likes. More than

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Speaker 1: a dozen people responded. Among them was Julia Frazel, a

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Speaker 1: thirty four year old software developer. She became the third

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Speaker 1: member of the team and brought the coding experience they needed.

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Speaker 1: But there was one important thing. They were still missing money.

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Speaker 1: In order to work full time on the period app project.

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Speaker 1: They needed some other way to pay the rent. In

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Speaker 1: early they got a German government grant called the Prototype Fund.

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Speaker 1: It's designed to promote open source technology and public interest projects.

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Speaker 1: And it felt like, um, okay, this is it. We

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Speaker 1: really was super motivated by this fund and we thought, okay,

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Speaker 1: this is our chance, now or never. Marie and her

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Speaker 1: team already had a list of ways they knew they

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Speaker 1: wanted their period app to be different. Some of them

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Speaker 1: had to do with design things like no gendered colors, pictures,

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Speaker 1: or text. Some had to do with making the tech

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Speaker 1: open source, and some had to do with how the

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Speaker 1: app itself would work and what kinds of predictions it

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Speaker 1: would make or not make. Beyond the privacy issues, predicting

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Speaker 1: when women might get pregnant is probably the most controversial

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Speaker 1: thing about period apps. Most of the commercial apps you'll

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Speaker 1: find in the app store will show you a few

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Speaker 1: days or a week when you should be most fertile.

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Speaker 1: Some even give the likelihood of whether you'll get pregnant

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Speaker 1: on a certain day down to the tenth of a percent,

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Speaker 1: based purely on when your last periods started. But everyone's

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Speaker 1: cycle is slightly different and some irregularity is common. Cycles

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Speaker 1: can last anywhere from twenty one days to forty days.

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Speaker 1: Period apps do not come close to being fail proof

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Speaker 1: as contraceptives. The Drip team decided they needed to base

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Speaker 1: their app on science. They turned to Patre Frankermen, a

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Speaker 1: gynecologist at Heidelberg University Hospital. PIT is an expert on

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Speaker 1: what's called FAB or fertility awareness based methods for determining

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Speaker 1: when women can get pregnant. Recently, she has become interested

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Speaker 1: in period apps since more than thirty years, I'm doing

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Speaker 1: research on the fertile window of the female cycle and

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Speaker 1: on FAV methods, and of course I'm very interested in

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Speaker 1: app supporting women in using those methods. And my second

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Speaker 1: motivation was is that as a gynecologist, I meet young

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Speaker 1: women and teens, or I met already young women and

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Speaker 1: teens who experienced unplanned pregnancies with those apps, even the

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Speaker 1: daughter of a close friend of mine. Page Cluss surveyed

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Speaker 1: a dozen apps that were already on the market last

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Speaker 1: year and which claimed to help women choose the best

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Speaker 1: time of the month to have sex in order to

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Speaker 1: get pregnant. She graded then on a thirty point scale

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Speaker 1: based on how they determined the fertile window, what study

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Speaker 1: results existed to back up that less it, what study

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Speaker 1: results they had to show the app works, and whether

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Speaker 1: they offer any counseling to users. All the calendar based

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Speaker 1: apps she reviewed, including Clue and Flow, got zero out

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Speaker 1: of thirty points. Even Natural Cycles, a Swedish app that

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Speaker 1: asks women to input their resting body temperature or basil

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Speaker 1: body temperature for better accuracy, got only two out of

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Speaker 1: thirty points in the survey. Part of the reason PA's

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Speaker 1: team graded all the apps solo is that there's not

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Speaker 1: much independent research to show whether they work. The other

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Speaker 1: reason is that when it comes to periods, past performance

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Speaker 1: is no guarantee of what will happen in the future.

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Speaker 1: Most of the apps to predictions, even if they use,

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Speaker 1: for example, parameters like the temperature. This is for example,

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Speaker 1: the apt Natural Cycles. It does predictions as well, and

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Speaker 1: in our opinion, therefore they are useless for contraception. When

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Speaker 1: you say predictions, do you mean making predictions based on

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Speaker 1: past cycles? Past the predictions on fertile days on the

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Speaker 1: basis of past scientists. Okay, and that is is not

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Speaker 1: going to help you not get pergnant yes, or get

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Speaker 1: pergnant yes. Yes, due to the variation of O eolation

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Speaker 1: and day and fertile face even in women with fairly

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Speaker 1: regular scientists think that's something that a lot of women

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Speaker 1: don't realize. Yes, yes, that's true. This is this is

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Speaker 1: the point. So do you think people should be trusting

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Speaker 1: their family planning to these apps? Um? No, because most

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Speaker 1: apps are lacking scientific standards or they showed poor results

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Speaker 1: up to now. Your body can actually tell you more

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Speaker 1: about when you're likely to get pregnant. There's a method

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Speaker 1: that's been around for decades called the Symptoms thermal method.

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Speaker 1: It involves taking your resting body temperature every morning and

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Speaker 1: checking your vaginal secretions to see when the cervical mucus

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Speaker 1: turns clear and stretchy like rag whites. It's a lot

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Speaker 1: more work than taking off days on a calendar, but

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Speaker 1: it fits the ethos of the project, which is helping

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Speaker 1: when and learn about their own bodies and take control

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Speaker 1: of their own fertility. I think that's the point that

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Speaker 1: you can't really predict anovulation will happen, but you can

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Speaker 1: only like watch your body symptoms to see when it happened,

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Speaker 1: and so you can only be sure after it happened.

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Speaker 1: But like I don't know, bodies are defended. Also depends

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Speaker 1: on your stress level or yeah, I think time zones, traveling, sleeping.

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Speaker 1: There's so much it can influence of relation. At the

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Speaker 1: time of relation. That was Tina, the mathematician on the

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Speaker 1: DRIP team. Before the team could start work on the

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Speaker 1: project in Earnest, something ironic happened. Tina got pregnant. I

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Speaker 1: was kind of afraid to tell them because I didn't

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Speaker 1: know if this would mean like the end of the

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Speaker 1: project for me. I was sitting down the kitchen, like

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Speaker 1: I have to tell you something. Um no, I pricked

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Speaker 1: it in, like oh how cool, And I'm like, yeah,

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Speaker 1: I don't know what this means for the project, and

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Speaker 1: they're like, oh, we make it work. The team finally

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Speaker 1: started work on their app in April of last year.

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Speaker 1: In late June, Tina had her baby. A few weeks

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Speaker 1: after that, they were back to weekly meetings at Tina's apartment,

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Speaker 1: working on the project while she breast fed. But the

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Speaker 1: prototype funding from the German government was only good for

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Speaker 1: about six months of work, and the team knew that

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Speaker 1: they would not be able to finish the entire project themselves.

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Speaker 1: They needed the open Sore part of the app to

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Speaker 1: really come into play. They needed a bigger team of

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Speaker 1: people to help code, and so we actually organized events,

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Speaker 1: I think three at least. We said, hey, if you're

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Speaker 1: interested in contributing, or if you like, if you want

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Speaker 1: to see what the project is all about, you can

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Speaker 1: meet us and we will set up the project together.

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Speaker 1: Because it's a little bit of a pain and I

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Speaker 1: think sometimes it even took two hours from like saying

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Speaker 1: hello to the first person having the app running on

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Speaker 1: their phone. But I think it was like it's kind

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Speaker 1: of nice to get people over this sometimes painful step,

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Speaker 1: like not sitting at home and you're like, oh, why

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Speaker 1: do I get this error message? Um, and then maybe

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Speaker 1: quitting but you're sitting there all together like talking a

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Speaker 1: little bit, but also important person might be already a

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Speaker 1: step ahead and they can tell you, like what they did.

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Speaker 1: The Drip team won another fellowship from the Mozilla Foundation

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Speaker 1: and that help them get the word out about the

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Speaker 1: project and they joined some programming workshops called Code and Cake.

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Speaker 1: The workshops are run by a group of programmers who

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Speaker 1: use the coding language Ruby on rails, and they helped

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Speaker 1: teach newcomers to code. They found a lot of interest.

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Speaker 1: A designer helped figure out the user interface. Another designer

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Speaker 1: made a logo It's not Pink and Curly, and over

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Speaker 1: the course of a few months, they created an app

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Speaker 1: that lets users track population and other symptoms while keeping

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Speaker 1: their personal data privates. Along the way, the number of

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Speaker 1: code contributors grew from three Marie, Tina and Julia to seventeen.

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Speaker 1: Here are two of the volunteers, Sophia and Maria, a

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Speaker 1: Russian couple who live in Berlin, talking about how they

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Speaker 1: got involved. We were standing outside the Rainbow Cafe during

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Speaker 1: a break in the Drip launch party. So, okay, I

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Speaker 1: will reveal the secret. So I'm my older they working

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Speaker 1: this programmer and they is my wife and she was

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Speaker 1: really curious about programming. She actually has a degree in programming.

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Speaker 1: But it's never gonna yeah, yeah, So we decided to

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Speaker 1: make something real, like to find some project to work

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Speaker 1: on it on, something grills that we can potentially also use.

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Speaker 1: Sophia doesn't even have an Android phone, so she cannot

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Speaker 1: use drip herself, but Maria does. She had been using Flow,

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Speaker 1: the Belarusian app that came under fire for sharing data

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Speaker 1: with Facebook. So which from this ink and faery floor

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Speaker 1: and try to drip out for iditon at clue. The

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Speaker 1: Bloody Health Collective and the Drip app are a sign

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Speaker 1: of the times. She thinks people are caring more and

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Speaker 1: more about what health apps and the rest of the

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Speaker 1: tech industry do with their data. When a group of

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Speaker 1: people get together and say, hey, let's just build this,

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Speaker 1: I think that's great. I mean, it's the same that

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Speaker 1: I did, right and and very years to talk to

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Speaker 1: them because I think we have, you know, very much

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Speaker 1: on the same mission. And I would be very curious

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Speaker 1: also to ask them, like, what is it that you

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Speaker 1: feel that we are doing that doesn't meet your requirements?

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Speaker 1: Why did you feel that there is a need for this.

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Speaker 1: Widea argues that for lots of users, having their data

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Speaker 1: stored somewhere else than their phones is actually a really

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Speaker 1: good thing. It helps ensure they don't lose years worth

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Speaker 1: of period tracking data if they lose their phones. It

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Speaker 1: could help researchers use aggregated data from lots of different

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Speaker 1: users to learn more about periods themselves. And finally, because

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Speaker 1: clues developers can see how users are interacting with the app,

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Speaker 1: it's a lot easier for them to fix things that

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Speaker 1: go wrong. And then maybe they have something also to

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Speaker 1: learn from me. Who have you know, maybe seen the

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Speaker 1: limitations of what happens when you don't have a back end,

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Speaker 1: when you don't like well, maybe they want to do

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Speaker 1: something different. Now, I don't know. I don't haven't spoken

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Speaker 1: to them, but I'd be very curious to the bad sekend.

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Speaker 1: All the parts of the app that users don't really

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Speaker 1: see will be a bigger challenge for Marie and Tina's group.

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Speaker 1: They are dependent on users telling them what's working with

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Speaker 1: the ab and what isn't they cannot see it themselves.

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Speaker 1: And another challenge is that for now, Drip is only

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Speaker 1: available on git lab and Open Source Software Forum. It's

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Speaker 1: not in the app stores where most people download new

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Speaker 1: programs for their phones. To make the first female designed

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Speaker 1: open source period app a success, Drip first needs a

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Speaker 1: lot more people to start using it and even more importantly,

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Speaker 1: to give feedback about how to make it better, and

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Speaker 1: Marie and the team will eventually need to focus on

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Speaker 1: other jobs, so they need coders to contribute to it too. Yes.

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Speaker 1: One important step in creating that team was the launch

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Speaker 1: party at their Rainbow factory. The initial response was good.

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Speaker 1: Here Tam Eastley, a Canadian developer who has lived in

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Speaker 1: Berlin for years. The first thing that I was really

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Speaker 1: excited about is normally, when you download an app, it

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Speaker 1: says this app is going to have access to like

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Speaker 1: your camera, your location. You're like this random folder you

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Speaker 1: didn't even know existed, and then you you have to

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Speaker 1: agree otherwise you can't use it, and you're so rarely

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Speaker 1: aware of what you were agreeing to and you just

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Speaker 1: end up saying okay because you want to use it.

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Speaker 1: But with this app, it was like, this app will

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Speaker 1: not have access to anything on your device, and I forget.

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Speaker 1: I assume you had to say okay to this, but

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Speaker 1: I was just like, I've never ever seen this before

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Speaker 1: and an app this is so cool. They will need

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Speaker 1: to find a lot more users like Tam to make

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Speaker 1: drips self sustaining and to ensure that the work they've

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Speaker 1: put into it so far won't be in vain. A

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Speaker 1: few weeks after the launch, Marie told me that about

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Speaker 1: fifty beta testers had downloaded the app and suggestions for

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Speaker 1: tweaks to the code we're pouring in. Marie is optimistic.

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Speaker 1: It's also about switching the role of this passive user

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Speaker 1: to an active contributor, if you want to see it

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Speaker 1: like that, So being like, do I actually like that?

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Speaker 1: Did I expect something else? And this is kind of

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Speaker 1: the question that everybody can answer. Next month, the team

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Speaker 1: is planning to add Drip to f Roid, an app

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Speaker 1: store for free and open source software. They hope that

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Speaker 1: will increase their user base. To Marie, the small community

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Speaker 1: that's developing around the app is its biggest strength. It's

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Speaker 1: also a sign of how people are thinking more and

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Speaker 1: more about not just how the software they use helps,

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Speaker 1: but also what it takes from users and whether that

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Speaker 1: trade off is worth it. And that's it for this

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Speaker 1: week's prognosis. Thanks for listening. Do you have a story

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Speaker 1: about healthcare in the US or around the world, We

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Speaker 1: want to hear from you. We're on Twitter at the

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Speaker 1: Cortes or at Naomi Kresky. If you were a fan

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Speaker 1: of this episode, please take a moment to rate and

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00:26:07,960 --> 00:26:10,880
Speaker 1: review it. It really helps new listeners find the show.

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Speaker 1: This episode was produced by Lindsey Craterwell. Our story editors

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Speaker 1: were Drew Armstrong and Rick Shine, Francesco Levia's head of

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Speaker 1: Bloomberg Podcasts. We'll be back on April twenty five with

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Speaker 1: a new episode