Short Wave - Who Else Can See Your Period Tracker Data?

Episode Date: May 18, 2022

Apps can be a great way to stay on top of your health. They let users keep track of things like exercise, mental health, the quality of their skin, and even menstrual cycles.But health researchers Giulia De Togni and Andrea Ford have found that many of these health apps also have a dark side — selling your most personal data to third parties like advertisers, insurers and tech companies. Emily talks to the researchers about the commodification of data, and their suggestions for increasing the security of your - the consumer's - information.Email us at [e-mail] pcm.adswizz.com for information about our collection and use of personal data for sponsorship and to manage your podcast sponsorship preferences.NPR Privacy Policy

You're listening to Shortwave from NPR. Hey everyone, Emily Kwong here. A couple weeks ago, a draft Supreme Court document leaked. A majority opinion to overturn Roe v. Wade, which is the case upholding the federal right to an abortion. If that draft were to become law, abortion restrictions would be triggered in a number of states. And some privacy experts are concerned that if data stored on apps like period trackers were sold to a third party or subpoenaed, It may suggest whether someone had an abortion and that data could possibly be used to build a case against that person. Many, many apps out there do protect users' privacy.

But as society navigates the implications of repealing Roe v. Wade, we wanted to encore this piece about the buying and selling of health data. Okay, here's the show. Today, I want to talk about someone, someone special, who's been knocking down my door every month since the sixth grade. My period. I got my period way before my friends. It was a nightmare, but thankfully I had my mom around. She even gave me a gift, this hardcover book, which was like an illustrated version of the Leanne Womack song, I Hope You Dance. I think it was her saying, you're becoming a woman now, and I was really mortified. But mom also taught me this useful trick for period tracking. And like taking ownership over your cycle, which was to mark my calendar with red dots.

The dots would get a little bigger, the heavier the flow got, and then a little smaller when I was near the end of my period. I had a very similar story. My mom always drew a red line in her calendar and taught me to do the same because we carried around like physical planners when I was in high school. Andrea Ford is a health data researcher at the University of Edinburgh, and she's been collaborating with another researcher there, Julia Dutoni. I was really bad tracking my period. I kept missing the date.

I also had a physical planner when I was a school, so I did use my diary. But then sometime I would forget, and it was always a surprise. Oh, now it has arrived. But six years ago, I started using period tracking apps in 2015. And since then, I have to say, I know how to better schedule my, you know, meeting, appointment, holidays. It helps me very much to just make sense of if you want my body, but also my schedule more in general. As you might have guessed, Andrea and Julia's research focuses on period tracking apps. There are tons of them out there. I use one. I abandoned the dot method years

ago. And their mission as researchers is to understand the kinds of data these apps collect and why. There is so much data fed into it. So with the promise of helping you understand your body better, these apps ask you many questions, which are quite private, including questions such as, how often do you have sex? How often do you masturbate? What kind of contraception methods do you use and so on? It varies by app, but some of them will ask sensitive personal information, including your medication and then things like your mood, skin and hair quality, such a vast range of information. To research this, Andrea and Julia conducted interviews with app users. They found that people used period apps primarily to track fertility or birth control or to anticipate PMS symptoms and even their own emotions. People liked feeling in control of their health. And these apps help science researchers too. Because if lots of people are using apps and inputting all sorts of data, it's a massive amount of data that can be aggregated and search for

patterns. There is such a cool potential for understanding more about how the menstrual cycle, which has actually recently been classified as a fifth vital sign by the American College of Obstetrics and Gynaecologists. So it has a very fundamental relationship with lots of aspects of health, not just reproduction. But this data, it's not just used to reclaim your personal control over your own health or to advance scientific understanding. A lot of your health data, not just period info, is also bought and sold to advertisers for mere pennies. Today on the show, the data surveillance revolution. What really happens when you log your health data, where it's going and what it's being used for.

I'm Emily Kwong. You're listening to Shortwave, the Daily Science Podcast from NPR. So when we started working on this episode, I was curious. I wanted to. to learn more about the science-fueling my period tracking app. But I didn't realize that all the data I've been logging might be commodified. And not just that, talking to Julia and Andrea, it's clear this buying and selling of data happens all the time for all kinds of health apps. Even Julia, one of the people researching health tech and raising alarm bells, even she's had her data used this way.

Since I started using flow, every time my period is late, even just by one day, I receive ads on Facebook, Google and YouTube about pregnancy tests all the time. And then if I'm late for more than one day, I receive other ads about family planning, how to have a healthy baby. And, you know, a lot of products are just advertised to me constantly. I'm bombarded with this. And this happens every month. for the past six years. That's fascinating. Wow.

So when I'm putting in my data about my period or my mood or my sweatingness, whatever, that might not just stay in the app. It might get shared. No, it might well go to third companies. And there is this study in 2019 that found out that about 79% of health apps share user data outside the app. I have to say, at this point, in 2022, I am not surprised by these targets. ads anymore. I'm not surprised that I'll never see a scent from my personal data. I've passively accepted it. What I am surprised by is that the long privacy policy I got to approve before

using my period tracking app isn't a given. Laws around the world protecting privacy actually vary a lot. And there's a little incentive for them to provide specifics because it increases the odds that they could face liability for disclosing incorrect information, and also that the users may not want to download that app. And disclosure is pretty interesting in this context. Because, yes, our data is being bought and sold by third parties, but some companies, like Google and Facebook, don't even need to buy the data. They can collect it themselves from websites and apps that use their code.

So one thing that people don't necessarily know about how data is collected is that a lot of the infrastructure for apps and websites, digital infrastructure, is provided by companies like Facebook. So they have software development tools that automatically sync with Facebook or send data to Facebook. So if there's a website with an integrated like button, that will be connected to Facebook. So there's a lot of structural connections. It's not just like a transaction necessarily at the end, you know, a kind of business transaction where the company is handing the data over. They're really interwoven. And the reason for this is to benefit advertisers. So, for instance, the data of pregnant women is particularly valuable to advertisers as expecting

parents are likely to change their spending habits. In the US, an average person's data is worth $0.10, whereas a pregnant woman is worth $1.50. So, for, 15 times as much. Yeah, that's right. A pregnant person's health data is worth 15 times more than a non-pregnant person's because companies know that soon-to-be parents are opening their wallets. They've got diapers, car seats, newborn clothes, all sorts of things they suddenly need to drop loads of cash on. So any little scrap of data is valuable. Period tracking is a really great example and kind of a more extreme example because the data is so intimate, as Julia said, pregnant women are a high value demographic. The personal nature of the data kind of has helped raise some red flags and some alarm bells, but data has been shared through health apps for a very long time. And then when you start digging into it, you realize how systemic the data economy is. So systemic that it has a name. Surveillance, capitalism.

Which describes a market-driven process where the commodity for sale is us. It's our personal data. It captures the production of this data and relies on mass surveillance of the internet. So every kind of search we do. And this activity is often carried out by companies that provide us with free online services, such as search engines, Google, and social media platforms, Facebook. But be aware that when something is free, usually you become the product. Basically, nothing is free.

Nothing is free. And in the case of health apps, you're not seeing a profit these companies are. And the thing they're profiting from is you. And you know that creepy myth that your phone will market you something you were just talking about because it was secretly recording you? Team Shortwave wants you to know it really is just a myth. But the ads do eerily mirror your wish list because of all the data analysis these companies are constantly doing. All of their confusing privacy policies we ignore, which let them track and analyze our most intimate details for years.

I didn't really understand the magnitude of all of this. And it appears other health app users are in the dark too. Andrea and Julia conducted interviews for that paper they published last fall and talking to people injury remembers hearing a lot of confusion. The stories that came out in the interviews that we did were remarkable for how little people thought about these issues. I mean, people were generally kind of aware or like if you ask them about it directly, they'd say, yeah, my data is probably being sold to somebody. Or, yeah, I don't think that these are very private. But the level to which it was what someone called a no-exit situation is just like, well, this is life.

Like, this is something that I need. It's giving me a lot of benefits, and I don't feel like I have any power to change the terms on which I'm able to access it. That was really striking. And I experienced that myself, too. It's just kind of like a shrug. Like, well, what can you really do? So at this moment, I'm like, you know, panic scrolling through the permissions of all the apps on my phone, which Andrea and Julia totally recommend.

Take a look at what the apps have access to. But here's the real question. Should that responsibility to safeguard our data really rest on the shoulders of us consumers? Andrea doesn't think so. She thinks the burden of keeping our data safe and private rests with the government. I think there needs to be systemic regulation to keep people safe to protect democratic values, to even protect consumer values. You could frame it a lot of different ways.

But companies need to be held accountable for what, they do with the data for making it transparent. In Europe, there's a big difference because of GDPR, which is the European Union data protection rules. So some companies will have different ways of running their app for European users versus users elsewhere in the world. And that's pretty clear that users' privacy is not something that app companies care about if they're making two versions of an app. That example also shows that regulations do something and are worth doing, even though the power of big companies can be really intimidating. For Julia and Andrea, the key to keeping surveillance capitalism in check is user empowerment and regulation, which can only happen

if we talk about data privacy more, make big tech our business. What I hope for might be quite high in the sky, but I... That's okay. I would really like to hear people, not just in the tech development circles, but people who use technology have conversations about what they value. Like, I think the behavioral economy, as I was saying, where the surveillance capitalism shapes people's behavior that really raises some questions about like free will, democracy. My brother, for example, I was chatting with him about this. And he was like, so what, I get better, more relevant ads. This is brilliant. And I think a lot of people probably don't see the problem, which is, to me, says that we need to have a kind of robust conversation about what do we value as a society and how do we want that to look.

There's been a lot of, you know, questions about democracy in the wake of the elections and Facebook's involvement in them. That might seem like quite a stretch from period tracking. But I think they're really related. Like when you think about health, who's in charge of providing? health? Is that someone's individual responsibility? Is that something a company should be doing? I think it's a right moment for some really big, interesting conversations about what kind of society do we want to have. We want to note that Facebook or META pays NPR to license our content. Today's episode was edited by Sarah Saracen and produced by Rebecca Ramirez and Margaret

Serino, who pitched this episode and brought it to life. Marge also checked the facts. The audio engineer for this episode was Patrick Murray. I'm Emily Kwong. We'll see you tomorrow.