S1E4 / Social Media, Big Data & Other Solutions / Bob Filbin, Glen Coppersmith, John MacPhee, Nancy Lublin

How can social media, texting and big data be used to improve mental health and prevent suicide? And what can colleges and universities do to help their students?

Note: This season of American Diagnosis was originally published under the title In Sickness & In Health. 

This podcast was created by Just Human Productions. We’re powered and distributed by Simplecast. We’re supported, in part, by listeners like you.

Celine Gounder:  This is “In Sickness and in Health.” I’m Dr. Celine Gounder.

In this episode, we’re going to talk about topics that some parents may find unsuitable for young children. Parental discretion is advised.

Nancy Lublin: Crisis Text Line was born of the rib of another organization. So, I was the CEO of DoSomething.org at the time, and DoSomething communicates with young people by text. That’s how it’s got 5.7 million members, and we would send out messages about great campaigns we’re working on.

Huge open rates, terrific, but there would always be a couple of dozen messages sort of out of flow having nothing to do with the campaign, but personal stuff, like, ‘I’m being bullied and I don’t want to go to school tomorrow,’ or, ‘I think my best friend is addicted to crystal meth.’

Then we got a message from a girl that was sort of on a different scale. Like on a Richter scale, it was like a ten. And she sent us a message that said, ‘He won’t stop raping me. It’s my dad. He told me not to tell anyone. R U there?’ So we gave her the phone number for RAIN, the Rape and Incest Organization. They’re great. … And the truth is, we’ve never heard back from her.

Celine Gounder: This is Nancy Lublin with the Crisis Text Line. Her other organization, DoSomething.org, hosts campaigns having to do with social justice, community outreach, health, and loads of other issues for teens to rally around and do something about. And they communicate with teen and young adult users through text message.

Nancy Lublin: I’ve actually personally taken that number and tried to text it, tried to call it. I don’t know if she’s dead or alive. I don’t know if her father saw that message. I don’t know if she just changed her number. So, I talk about her often, ‘cause I hope that she hears this somewhere and knows that it really was that message and her reaching out to us for help that made me realize we really needed to start something. If people were going to turn to us by text, we needed to build something for them.

Celine Gounder: This was the moment, Nancy says, when she recognized the need, the possibility, and her responsibility. She had this open, anonymous text message line. It was the perfect platform on which to establish a safe space for young people, a place where they could quickly and quietly reach out for help no matter where they were — on the school bus, in the kitchen with their parents, at a college party.

Nancy Lublin: So, we want to be wherever people are in pain. So, that starts with the text. Right, that’s the number one form of communication that people use. But we know people are also on Facebook messenger, they’re on Kick, they’re on AfterSchool, they’re on Youtube. And so we’re in all of those places.

Celine Gounder: Crisis Text Line has been around for four years now, and a ton of people use it. There’s even a ticker on their website. At the time this episode was recorded, it had counted over 37 million messages sent since the Crisis Text Line was launched.

Crisis hotlines have been around for a long time, but in the last few years, they’ve started to evolve and diversify. Crisis Text Line is just one of the new avenues for help that we’ll explore in this episode.

Nancy calls the volunteer counsellors on her staff “empathy MVPs.” And the goal of her organization is not just to stop suicide, but to create a safe place for any kind of pain to be expressed.

Nancy Lublin: You define ‘crisis’ however that term means to you. We’re not a suicide line. We’re here for a panoply of things. Eating disorders, opioid addiction, anxiety, family issues. If you are in pain, you text us, 741-741, in the United States, and it’s like texting your mom, or texting your best friend. It’s anonymous and private and we’re here for you, 24/7.

Celine Gounder: Nancy believes in a kind of social responsibility toward people in pain. She looks at it as a version of “See something, say something.” You see someone out in the world who needs help, you do something. And, Nancy says, that shouldn’t be any different in an online community.

Nancy Lublin: I just think this is what it means to be part of a community and hoping for a good life for everyone. We all have an obligation to each other. At least, that’s the way I was raised, which is maybe why I do this for a living.

Celine Gounder: Nancy realized pretty early on that Crisis Text Line could provide better, more targeted help if they analyzed their users’ data — everything from demographics to frequency of words or emojis in a text. So one of her first hires was Bob Filbin, her chief data scientist. And he tells me that the overwhelming majority of their texters are people under the age of 25.

Bob Filbin: For young people, who are moving to new technologies and new platforms of communication consistently, there should be support for people in crisis on all of those new mediums that we develop for connection online.

Celine Gounder: Bob’s job involves a lot of number crunching to figure out the best way to help people in crisis.

When someone messages the Crisis Text Line, Bob says, they’re put in a queue. But while all of these people may feel that they’re in crisis, some need urgent, targeted help. So the Crisis Text Line takes advantage of their platform, and runs an algorithm on every message that comes in. The average user wait time is five minutes, between first contact and being put in touch with a counsellor. Unless that user is in very serious danger. Certain messages, Bob says, get answered in less than a minute.

Bob Filbin: The algorithm basically flags conversations that are high-risk and moves those conversations, those texters, to the top of our wait queue so they get served first by a crisis counsellor.

Celine Gounder: And even though the Crisis Text Line doesn’t bill itself as a “suicide hotline,” they do have a protocol for suicidal users. They call it “active rescue.”

Bob Filbin: There are four signs that a crisis counsellor looks for from a texter. And that is, they have the ideation, so they’re thinking about suicide, the means, the plan, and the timeframe.

Celine Gounder: When a texter meets these criteria, that’s when the counsellor springs into action and calls emergency services. They get about a hundred users with suicidal thoughts every day at the hotline. And, Bob says, they make an average of 10 active rescues daily.

But there are subtler signs, too, that Bob has picked up on by way of his data analysis. For example, the word “ibuprofen” was a better indicator of an active rescue situation than the word “suicide.” And this being a generation pretty comfortable expressing themselves in emojis — a crying face boosted the chances that a texter would need emergency services. Bob is also able to pin certain types of crises to certain times of day. Self harm and substance abuse, for example, tend to happen in the early morning hours. LGBTQ users, who make up nearly half of the CTL’s texters, aren’t just more likely to report suicide or depression. They’re also more likely to use the word “Mormon.”

And because the Crisis Text Line collects demographic data, they can identify when certain news events trigger crises in certain populations.

Bob Filbin: So like, around the election, we saw a big spike in LGBTQ and sexual abuse and Muslim-related conversations. So people who identify as Muslim reaching out, having anxiety about the election, people who are sexually abused reaching out and expressing concern and then the LGBTQ population as well reaching out and expressing concern or fear.

Celine Gounder: And all of this data collecting? It’s made the Crisis Text Line the third largest real-time personal crisis data center in the country. Only the Centers for Disease Control and Prevention and National Institutes of Health are bigger. This kind of information could lead to changes in the real world. For example, if we know, as Bob does, that texts about substance abuse peak around 5 AM, then maybe drug detox and treatment centers should be opening their doors even earlier, before typical 8 to 5 doctor’s office hours, and sending staff out to be in the right place at the right time to do outreach. This kind of data could even change the way that the loved ones of someone struggling with addiction or suicidal thoughts or an eating disorder pay attention to the issue, or talk to them when they’re in crisis.

And the Crisis Text Line isn’t stopping at text data, as CEO Nancy Lublin said, they want to be where people are in crisis, across social media platforms.

The Crisis Text Line partnered with Facebook in March 2017 to find new ways to reach people in pain. So now, a concerned friend or family member can flag someone who seems to be in crisis, and Crisis Text Line will reach out the next time that person logs on to Facebook. And they can start a chat, right then and there, through Facebook messenger.

There’s good reason for social media companies like Facebook to work with the Crisis Text Line and others like it. The reach and impact of social media is massive and growing quickly. And many are concerned, with good reason, about the impact of social media on mental health, as we described in our last episode. They’re also concerned about the risk of copycat behavior — suicide contagion. Facebook uses artificial intelligence — basically computerized pattern recognition — to sift through posts and videos and block certain kinds of images. But AI still can’t replicate a human’s nuanced understanding and sensibilities, so much of the vetting still has to be done the old-fashioned way, by an army of human moderators. But whether you’re talking man or machine, there’s still a lot we don’t understand, a lot more to study, a lot more to learn.

Glen Coppersmith: This is the early days in this kind of work. We’re sort of still in the exploratory phase, to a large extent. So, I will share with you some preliminary results, and realize that they’re just that. There’s a lot more work to be done here.

Celine Gounder: This is Glen Coppersmith.

Glen Coppersmith: All right. There we go. Hi. My name’s Glen Coppersmith. I’m the founder and CEO of QNTFY. That’s spelled Q-N-T-F-Y. And we’re a small mental health company startup around psychology and data science, and sort of the intersection of what’s happening in both mental health and in sort of behavioral psychology, and the cutting edge of data science.

Celine Gounder: Glen calls himself a “recovering academic.” He used to publish papers on technology and communication and psychiatry, and still does sometimes. But after awhile, he wanted to bridge the gap between ideas about innovations and the technology itself. He wanted to make strides in mental health by going to the source by asking people to volunteer information about themselves, so that he, and his company, could analyze it and make things better.

Glen Coppersmith: A lot of what we do is around actually data donation site, ourdatahelps.org, where people can go and opt in their data for analysis. And so, we have hooks into many of the popular social media sites – Facebook, Twitter, Instagram, a couple others – and we also have hooks into some of the wearables, and so like Fitbit and Jawbone. And so, someone can go there and donate their data, and fill out a short mental health questionnaire so we know something about their mental health history.

Celine Gounder: A major focus of Glen’s work is on people who have attempted suicide: what happened before, what in their online presence and in their volunteered information might help predict suicide risk.

Glen Coppersmith:  …there seem to be sort of two ways in which people interact with social media just prior to their suicide attempt. And one of them is that they tend to increase their posts. Sort of, maybe they’re reaching out for help. Maybe they’re more isolated, and this is a way in which they are able to feel connected to people. It’s unclear the reason why. … And on the other side, there are people that are – that entirely disconnect themselves from social media for days, and in some cases, weeks prior to their suicide attempt. And so, they have – they’ve taken quite the opposite approach, and have totally removed themselves and removed their interaction from social media.

Celine Gounder: So there isn’t any one way in which people behave on social media before a suicide attempt, and that’s actually a pretty important realization. Because it means that suicidal people aren’t one monolithic group. It’s helped Glen look for subgroups and within those subgroups — say girls between the ages of fourteen and twenty-four — he can pick up on unique trends.

Glen Coppersmith: We ran all of their texts through these emotion classifiers. And we saw that the users that would go on to attempt suicide had higher rates of emotional content than their matched controls did. And so, what this seems to indicate is that they’re posting more content that has sort of – it has emotional content, emotional words in them. And this is sort of pervasive prior to their suicide attempt and after their suicide attempt.

Celine Gounder: Immediately before a suicide attempt, for example, Glen sees a spike in angry posts, but in the weeks leading up to that attempt, a series of sad posts. Data points like these, having to do with how people express emotion, were once difficult or impossible to collect. But now Glen can pass truly nuanced information on to experts, to those working to target mental health services, to get those in crisis the help they need at the right time, in the right place, in the right way.

This isn’t enough to build an algorithm, Glen admits, but it’s making the picture a little clearer. Because QNTFY, much like the Crisis Text Line, is tapping into a well of specific, quantifiable information that wasn’t previously available in these kinds of numbers and detail in real-time. This kind of data used to be gathered through studies or surveys, and, sure, the information that Glen gathers is biased and incomplete. The people who donate their data are likely different in important ways from those who don’t, but there’s a lot more of it, and he can access it a lot more quickly.

The next step, Glen says? Deciphering what this data means, how to communicate it to health care providers, and most importantly, help them figure out how to use it.

Glen Coppersmith: And the piece of the puzzle here, the really gigantic piece, is like if I can tell when someone is at risk for suicide, what do you as a clinician do? Who’s the right clinician to tell? Who’s the – it’s sort of like this intervention piece. How do we go from a computerized algorithm being able to tell you something like this on to the next step of intervention is actually the hardest part here. And so this is where I think actually, the technology is gonna be sort of the easier part than figuring out how this works with the systems of care.

Celine Gounder: Glen recognizes the challenge in all of this. These are the early days of this kind of work, but he doesn’t think it’s going to take that long to see some real changes in the way we address mental health care and suicide…

Glen Coppersmith: This is a really exciting time. I mean, I’ve said this before, and in a rather public context, that I think we’re gonna learn more in the next five years about suicide and about mental health than we have in the last 50 or 500 years. It’s really an incredible time to be studying this phenomenon. And the most exciting piece of this is that I think we actually have a chance of actually changing something. Like for once, we’re actually able to record something, in part because of the wearables, because of the increase in technological accuracy and the increase in sort of real-time data collection, that we’re able to measure some things that we never could before.

Celine Gounder: That real change Glen is talking about, it’s possible because these advances in data collection mean that we can look at depression, anxiety and suicidality differently. Behavior leading up to suicide attempts: one week out, a month out, two years out. It used to be that such information was scarce, anecdotal, biased, largely unverifiable. Especially among young people, who so often operate out of sight or in inaccessible social circles.

But soon, we may be able to guess at mental health long before it becomes a crisis, to provide the tools for safe passage through a difficult situation instead of the liferaft at the last minute.

Celine Gounder: So that kind of holistic approach, it could and one day might take the form of a mental health and communication app. But it’ll also have to show up in old-fashioned, face-to-face approaches. Because making adolescence better for young people is about changing the culture that has made things so difficult to begin with.

This brings us back to suicide prevention being about education, which is a topic that came up a lot over the course of my reporting for this series. It’s something that a lot of parents who have lost a child to suicide wish they’d had. It’s a crucial element for every expert and even for some teens who have seen the benefits of education about depression and suicide. And I found one organization — it’s called the JED Foundation — that’s making a point of getting onto school campuses, and making those environments safer for their at-risk populations. Here’s JED’s executive director.

John MacPhee: I’m John MacPhee, Executive Director of the JED Foundation.

At the JED Foundation, we work with colleges and Universities quite closely on helping them examine and assess what they’re doing to support emotional well-being and mental health and reduce risks around suicide on campus.

Celine Gounder: When John says “quite closely,” he means it. When JED works with a college or university, they stick with them for four years. John refers to these schools as “JED campuses,” and they get advice, consulting, even tech services, designed to transform these schools into paragons of mental health support. They’re currently working with around 175 campuses, but John says the goal is to ultimately work with over 800.

JED operates with a detailed framework that covers everything from campus connectedness and student life skills to crisis response and access to deadly means on campus. Talking to John, it feels like JED has thought of everything, and it also highlighted how complicated it is to effectively address mental health and suicide in young people.

John MacPhee: We recommend that schools have a postvention protocol in place so that if there’s a tragedy, a suicide, a homicide, whatever it might be, on campus, that the school knows how they’re going to communicate about it, how they’re going to assemble, or if they’re going to assemble, students, how they’re going to dispatch counselors, talk to the public, etcetera, before such a tragedy happens. … But at the same time is very mindful of safe messaging, what we know about contagion, and to make sure that the school in this kind of a situation is not potentially fueling a contagion inadvertently.

Celine Gounder: Step one of preventing suicide, for the JED Foundation, is protecting emotional health. And that can mean everything from asking a student to leave and seek treatment off-campus to knowing when to forgive a young person for destructive behavior.

John MacPhee: So a school should have a clear medical leave policy — under what circumstances are they gonna ask a student possibly, or consider asking a student to leave for a mental health reason? What does that look like? Under what circumstances would that student be allowed back in? There should be an amnesty policy, so that if students come forward for themselves or a friend around a drug or alcohol issue that they’re not going to be disciplined, they’re not going to get in trouble, right? Because they sought help.

Celine Gounder: If you think about it, this is a pretty radical change for an institution to make. Schools are used to citing students for, quote, “bad behavior.” And what John is saying is maybe this isn’t always “bad” behavior. Maybe, sometimes, it’s a warning sign. Maybe it’s an opportunity for a school to help someone at risk.

John MacPhee: We want to make sure that they know that the school might say to them, hey, you had to have your stomach pumped, you were in the hospital, we’re concerned about, you should see a counselor, and we want to make sure you’re okay, but don’t discipline them. Because if you discipline them, all of the other kids are going to find out and the next time a kid’s in trouble, they’re not going to come forward.

Celine Gounder: A lot of what John talks about seems to tow a fine line. Educate students about identifying mental health problems, but don’t use technical medical terms. Talk about suicide, but choose your words carefully. Address risky behavior, but don’t draw negative attention to it.

If that sounds like a lot of work? Well, it is. That’s why it takes JED years to help a school overhaul its approach to mental health care and suicide education. Bringing about a healthy emotional climate takes a prolonged, holistic approach. Eliminating stigma isn’t always about eliminating negative terms. Sometimes it’s about inventing an entirely new language.

JED works with a basic assumption: the transition into adulthood is challenging. So, educating teens and young adults should be about more than academics… it should be about fostering social and emotional health.

So this is all great, right? Huge organizations across the country, showing up where young people are, whether that’s on a campus or on a social media site, and addressing their concerns and crises in real time. But does it work?

Brandaly Mora: The H.O.P.E. Club is like… that one club where you can just go to and talk to anybody there and you know that you have somebody that’s going to hear you well, and is going to give you good advice and is going to be truthful to you, and is going to listen to your problems.

Celine Gounder: You might remember Brandaly Mora from our last episode? She’s the teen who dealt with an enormous amount of social stress, and wound up really depressed, having to leave school and seek psychiatric care. But you’ll also remember that Brandaly? She’s a pretty positive kid. And a lot of that has to do with this club… the H.O.P.E. Club.

Brandaly Mora: And we definitely try to do the most that we can, and we try to partner up with other H.O.P.E. Clubs, do activities with them, spread more awareness, to let people know that we are a thing, you can come to us, the Hope Club is at your school and we have no trouble with anybody coming at any time.

Celine Gounder: H.O.P.E. stands for “helping overcome problems effectively” … the full name is actually the H.O.P.E. Sunshine Club… and they’re in schools across Florida, established and supported by the Florida Initiative for Suicide Prevention.

Brandaly Mora: I really liked the idea that, she said after, we talk about preventing suicide. We talk about trying to make a difference. Trying to let people know that, as a H.O.P.E. Club, we are here for other students, and that other students can come to us when they’re feeling down or anything like that. That we are that club that they can come to to release all their stress or anger or whatever it is.

Celine Gounder: H.O.P.E. works like a kind of community service club. Students are taught how to problem solve, how to communicate. And they talk about suicide openly, about recognizing people in crisis, about bullying and substance abuse. Brandaly was able to coach me on the warning signs of an at-risk kid.

Brandaly Mora: The sweaters, always trying to cover up their wrists or their legs or wherever. Like, if they’re too self-conscious about an area, you should talk to them, if they are self-harming, not only cutting… burning… and if they’re always down. Like if you see their personality change, it’s definitely something that you should take into consideration.

Celine Gounder: A note here: Brandaly Mora is fourteen years old. And she speaks about risk behaviors with the clarity and calm of a seasoned professional.

Brandaly Mora: I would definitely try to just talk to them, make sure they’re okay, be that one person that is there for them, be the person that does care, that is willing to listen to them and to give them advice.

Celine Gounder: Of course, Brandaly gets some of this wisdom from having gone through a traumatic episode… from being the person on the other side of things. But it’s H.O.P.E. Club that’s given her the language and the skills to actually go forth and do something for other kids. So what does that look like?

Sarah Molina: When I go to the meetings, we talk about the way — what can I do? In what ways can I do this? Just, if you can be that bold person, do it.

CG: That’s another member of H.O.P.E. Club, Sarah Molina. You’ve met her before, too. Like Brandaly, Sarah went through a severe mental health crisis. And H.O.P.E. Club was there for her on the other side, to teach her how to keep other kids from spinning out the way that she did.

Sarah Molina: For example, I was walking down the stairs the other day and I just saw this kid sitting by himself with his music blasting in his ears as he’s sitting criss-crossed just on his phone listening to music, listening to music. My friends had kept walking and I said, ‘I’m going to stay here, don’t worry. And I ended up speaking to the boy that was sitting listening to music, and we had a great conversation, actually. I asked him, is everything ok? Are you okay? … And from there we just talked and talked and we didn’t really talk about one another’s personal lives, but as I was able to get to know him, he went from a face that just looked so upset or so alone and…. I guess that the people who do approach these kids like this… there is a loss of communication in our society and we tend to forget that there are people who just need that one person to be with, you know? To just say, hey, be bold enough to speak to him. Like, you don’t know him. Just talk to him. And when I did get to do that, it changed my whole view on everything. And now we’re friends.

Celine Gounder: It’s hard to say, with any kind of certainty, whether hotlines and text lines and organizations like JED or the H.O.P.E. Club, whether they quote, “work.” Whether they’re actually preventing suicide. What we do have are numbers from places like the Crisis Text Line and QNTFY. Data about how many young depressed and suicidal people are looking for help, and how many calls are made to emergency services when suicide seems imminent. About the signs of suicidality, even weeks out, and the most effective ways to communicate with people who need help, based on their reviews of the counselling they receive. We have kids like Brandaly and Sarah — young people who were once in crisis themselves, who got the help they needed, and who are now being given the tools to do something, to keep other kids from the brink.

But most of these organizations are relatively new, just a few years old. Meaning that this generation of particularly anxious, depressed youth grew up as these groups were just getting off the ground, developing their techniques, learning how to help. As the JED Foundation proves, it takes a lot of time to shift perceptions, to create environments that champion emotional health.

What comes next is waiting. And a lot of work. And there is evidence that the conversation about youth suicide is coming to a head, that we’re shifting the way that we think about young minds and adolescent behavior and the way that we choose to talk about suicide. That shift, it’s playing out in a very public though not always very accurate way in teen pop culture. Next time, on “In Sickness and in Health.”

You can learn more about the organizations we talked about today by going to crisis-text-line-dot-o-r-g, or visiting j-e-d-foundation-dot-o-r-g. You can also donate your social media data for research by going to our-data-helps-dot-o-r-g.

If someone you know is in crisis or thinking of hurting themself:

• Do not leave them alone.

• Remove any firearms, alcohol, drugs or sharp objects that could be used in a suicide attempt.

• Take them to an emergency room or seek help from a medical or mental health professional.

• Call the U.S. National Suicide Prevention Lifeline at 800-273-TALK (8255).

• Or text the Crisis Text Line at 741-741.

• Another resource for LGBTQ youth is the Trevor Project’s Lifeline at 866-488-7386.

• Thank you for listening.

Credits: Today’s episode of “In Sickness and in Health” was produced by Hannah McCarthy and me. Our theme music is by Allan Vest.