Crisis Text Line (CTL) is sitting on a massive amount of data that, analyzed, could help save lives. Since its launch in 2013, the nonprofit has received more than 13 million text messages from people, mostly teens, from all over the country who need help in their moment of darkness. Users can text any time, about anything, from self-harm to romantic relationships, family issues to eating disorders, and get an immediate response from a live crisis counselor.
Now, CTL says it finally plans to do what it had in mind from the beginning: Share its data with researchers who could use it for good. “If you do research in mental health or linguistics or neuroscience or sociology or any of these fields, and you want to do primary research, you basically have to create your own study,” says founder and CEO Nancy Lublin. “You have to spend the time and money and a couple of years and hundreds of thousands of dollars to create a data corpus like this. Instead, we’re making it available for free. This is going to save so much time and so much money for people doing important work.”
Why open the floodgates now? For Lublin and CTL, user privacy is the number-one priority, and it was only recently that she felt the data set was large enough to be meaningful while also ensuring anonymity. Identifying details like names, addresses, and birthdays will be strategically scrubbed from the data before it’s shared with researchers. Here’s how the site’s FAQ section describes the process: “For example, if we scrub the name Tiffany, we replace it with Sam. Thus, all data becomes effectively anonymous, in that it is not possible to see what personally identifiable information has been replaced or not.”
Still, the concept of sharing such sensitive information about teenagers in their most vulnerable moments is surrounded with ethical red tape. Lublin and her team spent the last year forming an Ethics Committee to advise how to do it responsibly. And they’re not just letting any researcher access the data: The application process is stringent and puts the onus on the researchers to prove they’re using the data for good. CTL guarantees the data will never be sold for commercial use, and government agencies don’t get any special access, either. “There are a lot of hurdles here,” Lublin says. “We’re being very, very careful, and we know that’s gonna block some research, but we’d rather be safe. Our primary goal is to help people.”
Once researchers are given the go-ahead, they can use the data to shed light on trends like where crises spike on holidays, or dive deep into the context of a conversation to examine what kinds of words teens use to describe their experience with bullying or depression. Anything they discover must be shared with the rest of the CTL community so its 1,500 counselors (which Lublin wants to see grow to 3,000 by the end of 2016) can learn from it.
Already, the site has surfaced a multitude of unexpected takeaways. For example, eating disorder crises spike on Sundays. “That surprised me,” Lublin says. “To me, that’s like, Hey families, pay attention to this. Don’t just think the school guidance counselor is gonna take care of this for you.” Also, reports of self-harm happen throughout the day, meaning teens are cutting themselves in public places, at school or at work, not just in the privacy of their own bedrooms. That could prompt teachers and employers to be on the lookout and intervene. The University of Utah wants to know how location altitude impacts substance abuse. “That’s gonna be fascinating,” Lublin says. “Is there any relationship there?”
Applications are already rolling in, and a new batch of researchers will be approved once a quarter. “We’re just hoping this cascades and creates a tidal wave of smart research, smart journalism, smarter legislation, smart policing, and smart school boards,” says Lublin.