Speaker 1: I think it's a it's a problem that we have
Speaker 1: become used to having free digital services and free in
Speaker 1: quotation mark because of course we've been really paying without
Speaker 1: private data. These days, there seems to be a smartphone
Speaker 1: app for just about everything. One of the more popular
Speaker 1: categories are apps that track menstrual cycles. More than a
Speaker 1: hundred million women around the world already use them. Some
Speaker 1: are trying to get pregnant, others are trying to avoid
Speaker 1: getting pregnant, and many just want to better handle on
Speaker 1: what their bodies are doing. But these free apps have
Speaker 1: trade offs. Some use sensitive health information to place targeted ads.
Speaker 1: The apps all need to make money, and that might
Speaker 1: mean in a big picture sense, their main product is
Speaker 1: actually their users data. Welcome to Prognosis, Bloomberg's podcast about
Speaker 1: the intersection of health and technology and the unexpected places
Speaker 1: that is taking us. I'm your host, Michelle fe Cortes.
Speaker 1: For most of us, giving away our data is just
Speaker 1: the deal we make when we're using a free app.
Speaker 1: But a growing number of women are saying no, thank you,
Speaker 1: and some are taking matters into their own hands. Bloomberg's
Speaker 1: Naomi Kraski went to meet a group of feminist coders.
Speaker 1: Our story starts at the Rainbow Factory, a community space
Speaker 1: in Berlin's hot spot for startups, the Kreuzburg neighborhood. I'm
Speaker 1: standing in the cafe at the community space. It's packed
Speaker 1: with about two dozen people crammed around mismatched schoolroom style
Speaker 1: tables and shares. Someone just popped open a bottle of
Speaker 1: East Germans sparkling wine behind the bar, and they're handing
Speaker 1: it out for free. People are here to celebrate. Everyone
Speaker 1: stops hosting each other and settles down, turning their attention
Speaker 1: to a project and screen. Next to that screen is
Speaker 1: Marie cox Seek, a thirty year old sociologist and software developer.
Speaker 1: She pulls up a slide with a grid of logos
Speaker 1: for different period tracking apps. Don't get me wrong, I
Speaker 1: don't think pink is a bad color. I just think
Speaker 1: it's not the only one. And I also think flowers
Speaker 1: or the herd, or what butterfly? Or this this very
Speaker 1: cute girl with these big eyes. They don't really represent
Speaker 1: represent me, They don't really represent us. Marie is one
Speaker 1: third of the leadership team for Bloody Health, the coding
Speaker 1: collectives that just released the first female developed open source
Speaker 1: menstrual cycle tracker. In English, it's called DRIP. And this
Speaker 1: is the launch party. Now after all these things, oh no,
Speaker 1: there's like no privacy, no security, black box algorithms, Genno stereotypes.
Speaker 1: Now this is DRIP. The seats for the project were
Speaker 1: sewn back in when Marie got her first smartphone. It
Speaker 1: was an Android. She was a bit of a late
Speaker 1: adopter on the smartphone, but she knew what she wanted
Speaker 1: to download right away. I looked into the play store
Speaker 1: and I found a period app, um, and I just
Speaker 1: took like the first one. Yeah, I think it was Womanlock,
Speaker 1: which is also the icon with a pink flower on
Speaker 1: the black screen, and it was. It was the first
Speaker 1: app that I've seen. And the very same day, I
Speaker 1: met with a friend of mine and I was very
Speaker 1: excited and I told her, oh my god, I just
Speaker 1: found this cool period app. It's so useful. I love it.
Speaker 1: If you have ever had a period, you know why.
Speaker 1: Marie was so happy at first when she found that app.
Speaker 1: Periods can turn up at the most annoying times. They
Speaker 1: can ruin your sheets and your Tinder dates. But period
Speaker 1: apps promised to do more than just help you keep
Speaker 1: act of bleeding. The broader pitch is that if you
Speaker 1: give the app and of details, you can get a
Speaker 1: heads up on all the others, sometimes frustrating changes that
Speaker 1: come with your cycle. Why am I feeling depressed? What
Speaker 1: the heck is going on with my digestion? Could I
Speaker 1: be pregnant? The desire to connect the dots between the
Speaker 1: period and everything else has helped make the apps so popular.
Speaker 1: They're consistently in the top ten most downloaded in the
Speaker 1: app Store. Just about every commercial period app lets you
Speaker 1: do more than just click a calendar day so you
Speaker 1: remember when your last one happened. They also make predictions
Speaker 1: about when your next period will come. They let you
Speaker 1: track everything from sex and boozy nights out to ovulation tests,
Speaker 1: vaginal discharge, and resting body temperature. But apps don't necessarily
Speaker 1: have to meet the privacy standards of say, doctor or
Speaker 1: hospital records. In fact, as one of Marie's friends told her,
Speaker 1: the commercial apps can use your data for plenty of
Speaker 1: things that do not have anything to do with keeping
Speaker 1: track of your period. This first looked at me. She
Speaker 1: was a very close friend, so she looked at me
Speaker 1: and said, like, Marie, have you read the privacy policy?
Speaker 1: Of this app, and um, I was a bit annoyed
Speaker 1: at her because she kind of took away my joy
Speaker 1: in that moment um. But the following day I deleted
Speaker 1: the app. All of that data can be used for
Speaker 1: the same type of business that Facebook, Instagram and other
Speaker 1: major apps use it for. Facebook is already controversial, but
Speaker 1: here we're talking about even more personal data than what
Speaker 1: most people share with social media. Joanna Baron, a Brazilian
Speaker 1: researcher and digital rights activists who leads the group Coding Rights, explains,
Speaker 1: so it's a lot, a lot, a lot of information
Speaker 1: that is collected and the information that you get back
Speaker 1: it's a when's your period and when's your fertile moment.
Speaker 1: It doesn't need to ask all those questions to have
Speaker 1: this outcome as an information. So of course this is
Speaker 1: going somewhere else. And then if you go and look
Speaker 1: at the terms of services, they say we might give
Speaker 1: it to the data to third parties for advertisement purposes
Speaker 1: and for whatever purpose that's not the purpose of the app.
Speaker 1: Joanna's group did a study of period apps called Menstrue
Speaker 1: Apps how to turn your period into money for others.
Speaker 1: They found that information users give the apps can be
Speaker 1: shared with third parties, including social media platforms, marketing agencies,
Speaker 1: research institutes, employers, and Google Analytics. Flow, the biggest period
Speaker 1: app in the US, has collected more than thirteen billion
Speaker 1: data points about its users. Flow says the day helps
Speaker 1: women monitor irregular periods and has helped a lot of
Speaker 1: its users get pregnant. The app, based out of Mintsk
Speaker 1: in Belarus, got into hot water recently over sharing some
Speaker 1: user data with Facebook. After an uproar, the company said
Speaker 1: it was only using Facebook analytics to improve the user
Speaker 1: experience and that it would stop. But in China, where
Speaker 1: the biggest period apps in the world are based, companies
Speaker 1: have gone much further. Diema, one of the market leaders there,
Speaker 1: said it crunches its users data to find out whether
Speaker 1: to show them ads for tampons or ads for ovulation kits. Still,
Speaker 1: Joanna's group found that when it comes to privacy policies,
Speaker 1: not all commercial period apps are created equal. They cited Clue,
Speaker 1: a Berlin based period app that's especially popular in Europe,
Speaker 1: as an example of a clear privacy policy. Clue also
Speaker 1: lets you store your health tracking data on your phone
Speaker 1: without sharing it with the company, as long as you
Speaker 1: do not set up a user account. I wanted to
Speaker 1: get an industry perspective on this open source backlash against
Speaker 1: commercial period apps, so I went to visit Clue CEO.
Speaker 1: I'd a ten. I never started this company because of
Speaker 1: wanted to build a business. I wanted to solve a problem,
Speaker 1: and so I think there are definitely many nasty ways
Speaker 1: that you can be commercial in this industry, and that
Speaker 1: is happening. I do understand their sentiment. I still believe
Speaker 1: that there must be a different way. I think it's
Speaker 1: an it's the problem that we have become used to
Speaker 1: having free digital services and free incuptation mark because of course,
Speaker 1: within really paying without private data. Cluse terms of service
Speaker 1: allow user data to be shared with academic researchers, and
Speaker 1: it doesn't explicitly rule out commercial use. However, i'd just
Speaker 1: said she does not want to run targeted at or
Speaker 1: sell user data. But Clue has thirty million dollars in
Speaker 1: capital from investors, and she's wrestling right now with how
Speaker 1: to turn her period app into a sustainable business. She
Speaker 1: wouldn't talk about exactly how that might work, except to
Speaker 1: say that she has three concrete ideas that she's working
Speaker 1: on right now. Clue has already experimented with a subscription model,
Speaker 1: charging women about one dollar a month for more data analysis.
Speaker 1: Marie started seriously thinking about period apps after doing a
Speaker 1: study of Clue. She was working on her master's thesis
Speaker 1: and sociology and early and she interviewed ten women about
Speaker 1: how they used the app and what they were getting
Speaker 1: out of it. Some more bisexual, some heterosexual, Some wanted
Speaker 1: to get pregnant, and some did not. They were all
Speaker 1: getting something different out of the app. At some point,
Speaker 1: I had like nine different period apps on my phone
Speaker 1: and I was trying to track see how different they are.
Speaker 1: And that's where we get back to the idea of
Speaker 1: a black box. Murray had all these different apps on
Speaker 1: her phone, but she could not see into any of them.
Speaker 1: She didn't have access to any of the code. Even Clue,
Speaker 1: with it's easy to understand privacy policy didn't let her
Speaker 1: see what was going on behind the screens. If we
Speaker 1: use technology, um and we think it's useful and we
Speaker 1: think it makes her life easier, but at the same
Speaker 1: time we can't look behind the scenes, We can't understand
Speaker 1: what is actually happening with the data we generate. What
Speaker 1: is the code actually about? It became more and more
Speaker 1: important to me UM to uh, to rely on open
Speaker 1: source software. UM and so I was in a way
Speaker 1: like unsatisfied with period apps and with I think with
Speaker 1: health trekking apps in general. By September teen, Marie was
Speaker 1: toying with the idea of writing her own open source
Speaker 1: period app. She had already linked up with one potential collaborator,
Speaker 1: a thirty year old mathematician named Tina Baumant. Marie turned
Speaker 1: to Twitter to see if anyone else was interested in
Speaker 1: making it a more serious project. She tweeted in German
Speaker 1: something along the lines of who wants to fiddle around
Speaker 1: with an open source menstrual cycle app? With me? She
Speaker 1: included a gift of a little girl with a lot
Speaker 1: of attitude. Yeah, it's just a gift showing UM a
Speaker 1: small girl UM throwing very confidently giving away three tampons.
Speaker 1: I guess I just thought, in this moment, Okay, let's
Speaker 1: just give it a try, and let's see what happens
Speaker 1: if I tweet about it, UM and I got um
Speaker 1: quite a few retweets, quite a few likes. More than
Speaker 1: a dozen people responded. Among them was Julia Frazel, a
Speaker 1: thirty four year old software developer. She became the third
Speaker 1: member of the team and brought the coding experience they needed.
Speaker 1: But there was one important thing. They were still missing money.
Speaker 1: In order to work full time on the period app project.
Speaker 1: They needed some other way to pay the rent. In
Speaker 1: early they got a German government grant called the Prototype Fund.
Speaker 1: It's designed to promote open source technology and public interest projects.
Speaker 1: And it felt like, um, okay, this is it. We
Speaker 1: really was super motivated by this fund and we thought, okay,
Speaker 1: this is our chance, now or never. Marie and her
Speaker 1: team already had a list of ways they knew they
Speaker 1: wanted their period app to be different. Some of them
Speaker 1: had to do with design things like no gendered colors, pictures,
Speaker 1: or text. Some had to do with making the tech
Speaker 1: open source, and some had to do with how the
Speaker 1: app itself would work and what kinds of predictions it
Speaker 1: would make or not make. Beyond the privacy issues, predicting
Speaker 1: when women might get pregnant is probably the most controversial
Speaker 1: thing about period apps. Most of the commercial apps you'll
Speaker 1: find in the app store will show you a few
Speaker 1: days or a week when you should be most fertile.
Speaker 1: Some even give the likelihood of whether you'll get pregnant
Speaker 1: on a certain day down to the tenth of a percent,
Speaker 1: based purely on when your last periods started. But everyone's
Speaker 1: cycle is slightly different and some irregularity is common. Cycles
Speaker 1: can last anywhere from twenty one days to forty days.
Speaker 1: Period apps do not come close to being fail proof
Speaker 1: as contraceptives. The Drip team decided they needed to base
Speaker 1: their app on science. They turned to Patre Frankermen, a
Speaker 1: gynecologist at Heidelberg University Hospital. PIT is an expert on
Speaker 1: what's called FAB or fertility awareness based methods for determining
Speaker 1: when women can get pregnant. Recently, she has become interested
Speaker 1: in period apps since more than thirty years, I'm doing
Speaker 1: research on the fertile window of the female cycle and
Speaker 1: on FAV methods, and of course I'm very interested in
Speaker 1: app supporting women in using those methods. And my second
Speaker 1: motivation was is that as a gynecologist, I meet young
Speaker 1: women and teens, or I met already young women and
Speaker 1: teens who experienced unplanned pregnancies with those apps, even the
Speaker 1: daughter of a close friend of mine. Page Cluss surveyed
Speaker 1: a dozen apps that were already on the market last
Speaker 1: year and which claimed to help women choose the best
Speaker 1: time of the month to have sex in order to
Speaker 1: get pregnant. She graded then on a thirty point scale
Speaker 1: based on how they determined the fertile window, what study
Speaker 1: results existed to back up that less it, what study
Speaker 1: results they had to show the app works, and whether
Speaker 1: they offer any counseling to users. All the calendar based
Speaker 1: apps she reviewed, including Clue and Flow, got zero out
Speaker 1: of thirty points. Even Natural Cycles, a Swedish app that
Speaker 1: asks women to input their resting body temperature or basil
Speaker 1: body temperature for better accuracy, got only two out of
Speaker 1: thirty points in the survey. Part of the reason PA's
Speaker 1: team graded all the apps solo is that there's not
Speaker 1: much independent research to show whether they work. The other
Speaker 1: reason is that when it comes to periods, past performance
Speaker 1: is no guarantee of what will happen in the future.
Speaker 1: Most of the apps to predictions, even if they use,
Speaker 1: for example, parameters like the temperature. This is for example,
Speaker 1: the apt Natural Cycles. It does predictions as well, and
Speaker 1: in our opinion, therefore they are useless for contraception. When
Speaker 1: you say predictions, do you mean making predictions based on
Speaker 1: past cycles? Past the predictions on fertile days on the
Speaker 1: basis of past scientists. Okay, and that is is not
Speaker 1: going to help you not get pergnant yes, or get
Speaker 1: pergnant yes. Yes, due to the variation of O eolation
Speaker 1: and day and fertile face even in women with fairly
Speaker 1: regular scientists think that's something that a lot of women
Speaker 1: don't realize. Yes, yes, that's true. This is this is
Speaker 1: the point. So do you think people should be trusting
Speaker 1: their family planning to these apps? Um? No, because most
Speaker 1: apps are lacking scientific standards or they showed poor results
Speaker 1: up to now. Your body can actually tell you more
Speaker 1: about when you're likely to get pregnant. There's a method
Speaker 1: that's been around for decades called the Symptoms thermal method.
Speaker 1: It involves taking your resting body temperature every morning and
Speaker 1: checking your vaginal secretions to see when the cervical mucus
Speaker 1: turns clear and stretchy like rag whites. It's a lot
Speaker 1: more work than taking off days on a calendar, but
Speaker 1: it fits the ethos of the project, which is helping
Speaker 1: when and learn about their own bodies and take control
Speaker 1: of their own fertility. I think that's the point that
Speaker 1: you can't really predict anovulation will happen, but you can
Speaker 1: only like watch your body symptoms to see when it happened,
Speaker 1: and so you can only be sure after it happened.
Speaker 1: But like I don't know, bodies are defended. Also depends
Speaker 1: on your stress level or yeah, I think time zones, traveling, sleeping.
Speaker 1: There's so much it can influence of relation. At the
Speaker 1: time of relation. That was Tina, the mathematician on the
Speaker 1: DRIP team. Before the team could start work on the
Speaker 1: project in Earnest, something ironic happened. Tina got pregnant. I
Speaker 1: was kind of afraid to tell them because I didn't
Speaker 1: know if this would mean like the end of the
Speaker 1: project for me. I was sitting down the kitchen, like
Speaker 1: I have to tell you something. Um no, I pricked
Speaker 1: it in, like oh how cool, And I'm like, yeah,
Speaker 1: I don't know what this means for the project, and
Speaker 1: they're like, oh, we make it work. The team finally
Speaker 1: started work on their app in April of last year.
Speaker 1: In late June, Tina had her baby. A few weeks
Speaker 1: after that, they were back to weekly meetings at Tina's apartment,
Speaker 1: working on the project while she breast fed. But the
Speaker 1: prototype funding from the German government was only good for
Speaker 1: about six months of work, and the team knew that
Speaker 1: they would not be able to finish the entire project themselves.
Speaker 1: They needed the open Sore part of the app to
Speaker 1: really come into play. They needed a bigger team of
Speaker 1: people to help code, and so we actually organized events,
Speaker 1: I think three at least. We said, hey, if you're
Speaker 1: interested in contributing, or if you like, if you want
Speaker 1: to see what the project is all about, you can
Speaker 1: meet us and we will set up the project together.
Speaker 1: Because it's a little bit of a pain and I
Speaker 1: think sometimes it even took two hours from like saying
Speaker 1: hello to the first person having the app running on
Speaker 1: their phone. But I think it was like it's kind
Speaker 1: of nice to get people over this sometimes painful step,
Speaker 1: like not sitting at home and you're like, oh, why
Speaker 1: do I get this error message? Um, and then maybe
Speaker 1: quitting but you're sitting there all together like talking a
Speaker 1: little bit, but also important person might be already a
Speaker 1: step ahead and they can tell you, like what they did.
Speaker 1: The Drip team won another fellowship from the Mozilla Foundation
Speaker 1: and that help them get the word out about the
Speaker 1: project and they joined some programming workshops called Code and Cake.
Speaker 1: The workshops are run by a group of programmers who
Speaker 1: use the coding language Ruby on rails, and they helped
Speaker 1: teach newcomers to code. They found a lot of interest.
Speaker 1: A designer helped figure out the user interface. Another designer
Speaker 1: made a logo It's not Pink and Curly, and over
Speaker 1: the course of a few months, they created an app
Speaker 1: that lets users track population and other symptoms while keeping
Speaker 1: their personal data privates. Along the way, the number of
Speaker 1: code contributors grew from three Marie, Tina and Julia to seventeen.
Speaker 1: Here are two of the volunteers, Sophia and Maria, a
Speaker 1: Russian couple who live in Berlin, talking about how they
Speaker 1: got involved. We were standing outside the Rainbow Cafe during
Speaker 1: a break in the Drip launch party. So, okay, I
Speaker 1: will reveal the secret. So I'm my older they working
Speaker 1: this programmer and they is my wife and she was
Speaker 1: really curious about programming. She actually has a degree in programming.
Speaker 1: But it's never gonna yeah, yeah, So we decided to
Speaker 1: make something real, like to find some project to work
Speaker 1: on it on, something grills that we can potentially also use.
Speaker 1: Sophia doesn't even have an Android phone, so she cannot
Speaker 1: use drip herself, but Maria does. She had been using Flow,
Speaker 1: the Belarusian app that came under fire for sharing data
Speaker 1: with Facebook. So which from this ink and faery floor
Speaker 1: and try to drip out for iditon at clue. The
Speaker 1: Bloody Health Collective and the Drip app are a sign
Speaker 1: of the times. She thinks people are caring more and
Speaker 1: more about what health apps and the rest of the
Speaker 1: tech industry do with their data. When a group of
Speaker 1: people get together and say, hey, let's just build this,
Speaker 1: I think that's great. I mean, it's the same that
Speaker 1: I did, right and and very years to talk to
Speaker 1: them because I think we have, you know, very much
Speaker 1: on the same mission. And I would be very curious
Speaker 1: also to ask them, like, what is it that you
Speaker 1: feel that we are doing that doesn't meet your requirements?
Speaker 1: Why did you feel that there is a need for this.
Speaker 1: Widea argues that for lots of users, having their data
Speaker 1: stored somewhere else than their phones is actually a really
Speaker 1: good thing. It helps ensure they don't lose years worth
Speaker 1: of period tracking data if they lose their phones. It
Speaker 1: could help researchers use aggregated data from lots of different
Speaker 1: users to learn more about periods themselves. And finally, because
Speaker 1: clues developers can see how users are interacting with the app,
Speaker 1: it's a lot easier for them to fix things that
Speaker 1: go wrong. And then maybe they have something also to
Speaker 1: learn from me. Who have you know, maybe seen the
Speaker 1: limitations of what happens when you don't have a back end,
Speaker 1: when you don't like well, maybe they want to do
Speaker 1: something different. Now, I don't know. I don't haven't spoken
Speaker 1: to them, but I'd be very curious to the bad sekend.
Speaker 1: All the parts of the app that users don't really
Speaker 1: see will be a bigger challenge for Marie and Tina's group.
Speaker 1: They are dependent on users telling them what's working with
Speaker 1: the ab and what isn't they cannot see it themselves.
Speaker 1: And another challenge is that for now, Drip is only
Speaker 1: available on git lab and Open Source Software Forum. It's
Speaker 1: not in the app stores where most people download new
Speaker 1: programs for their phones. To make the first female designed
Speaker 1: open source period app a success, Drip first needs a
Speaker 1: lot more people to start using it and even more importantly,
Speaker 1: to give feedback about how to make it better, and
Speaker 1: Marie and the team will eventually need to focus on
Speaker 1: other jobs, so they need coders to contribute to it too. Yes.
Speaker 1: One important step in creating that team was the launch
Speaker 1: party at their Rainbow factory. The initial response was good.
Speaker 1: Here Tam Eastley, a Canadian developer who has lived in
Speaker 1: Berlin for years. The first thing that I was really
Speaker 1: excited about is normally, when you download an app, it
Speaker 1: says this app is going to have access to like
Speaker 1: your camera, your location. You're like this random folder you
Speaker 1: didn't even know existed, and then you you have to
Speaker 1: agree otherwise you can't use it, and you're so rarely
Speaker 1: aware of what you were agreeing to and you just
Speaker 1: end up saying okay because you want to use it.
Speaker 1: But with this app, it was like, this app will
Speaker 1: not have access to anything on your device, and I forget.
Speaker 1: I assume you had to say okay to this, but
Speaker 1: I was just like, I've never ever seen this before
Speaker 1: and an app this is so cool. They will need
Speaker 1: to find a lot more users like Tam to make
Speaker 1: drips self sustaining and to ensure that the work they've
Speaker 1: put into it so far won't be in vain. A
Speaker 1: few weeks after the launch, Marie told me that about
Speaker 1: fifty beta testers had downloaded the app and suggestions for
Speaker 1: tweaks to the code we're pouring in. Marie is optimistic.
Speaker 1: It's also about switching the role of this passive user
Speaker 1: to an active contributor, if you want to see it
Speaker 1: like that, So being like, do I actually like that?
Speaker 1: Did I expect something else? And this is kind of
Speaker 1: the question that everybody can answer. Next month, the team
Speaker 1: is planning to add Drip to f Roid, an app
Speaker 1: store for free and open source software. They hope that
Speaker 1: will increase their user base. To Marie, the small community
Speaker 1: that's developing around the app is its biggest strength. It's
Speaker 1: also a sign of how people are thinking more and
Speaker 1: more about not just how the software they use helps,
Speaker 1: but also what it takes from users and whether that
Speaker 1: trade off is worth it. And that's it for this
Speaker 1: week's prognosis. Thanks for listening. Do you have a story
Speaker 1: about healthcare in the US or around the world, We
Speaker 1: want to hear from you. We're on Twitter at the
Speaker 1: Cortes or at Naomi Kresky. If you were a fan
Speaker 1: of this episode, please take a moment to rate and
Speaker 1: review it. It really helps new listeners find the show.
Speaker 1: This episode was produced by Lindsey Craterwell. Our story editors
Speaker 1: were Drew Armstrong and Rick Shine, Francesco Levia's head of
Speaker 1: Bloomberg Podcasts. We'll be back on April twenty five with
Speaker 1: a new episode