Last winter, several dozen people who were struggling with suicidal urges and bouts of intense emotion opened their lives to a company called Mindstrong, in what has become a closely watched experiment in Silicon Valley.
Mindstrong, a venture co-founded by a former director of the National Institute of Mental Health, promised something that no drug or talk therapy can provide: an early-warning system that would flag the user when an emotional crisis seemed imminent — a personal, digital “fire alarm.”
For the past year, California state and county mental health officials, along with patient representatives, have met regularly with Mindstrong and another company, 7 Cups, to test smartphone apps for people receiving care through the state’s public mental health system. Officials from 13 counties and two cities are involved, and the apps are already available to the public.
The new users, most of whom have a diagnosis of borderline personality disorder, receive treatment through the Los Angeles County mental health network, and were among the first test subjects in this collaboration. They allowed Mindstrong to digitally install an alternate keyboard on their smartphones, embedded in the app, and to monitor their moment-to-moment screen activity.
“People with borderline have a very difficult time identifying when distress is very high,” said Lynn McFarr, director of the cognitive and dialectical behavior therapy clinic at Harbour U.C.L.A. Medical Center, which provides care for people in the Los Angeles County system. “If we can show them, in this biofeedback fashion, that they went off the rails yesterday, say, after they got into a fight with a co-worker, then they’d be able to anticipate that emotion and target it with the skills they’ve learned.”
The potential for digital technology to transform mental health care is enormous, and some 10,000 apps now crowd the market, each promising to soothe one psychological symptom or another. Smartphones allow near continuous monitoring of people with diagnoses such as depression, anxiety and schizophrenia, disorders for which few new treatments are available. But there has been little research to demonstrate whether such digital supports are effective.
California’s collaboration with Silicon Valley is an attempt to change that: in effect, enlisting some of the state’s most privileged residents to help some of its least. California has set aside taxpayer money to pull it off, more than $100 million over five years, which is a portion of Proposition 30, a tax increase on millionaires approved in 2012. If Big Data can help manage persistent mental distress, the path forward is likely to run through the Golden State.
But if early signs are any indication, the road will be slow and winding, pitted with questions about effectiveness, privacy and user appeal. At least for now, California’s effort to jump-start medicine’s digital future is running into some of the same issues that have dogged old-fashioned drug trials: recruiting problems, questions about informed consent, and the reality that, no matter the treatment, some people won’t “tolerate” it well, and quit.
“We need to understand both the cool and the creepy of tech,” said Keris Myrick, chief of peer services for Los Angeles County, who has been deeply involved in the collaboration. Ideally, she said, the apps could give people personalized tools to manage their distress and take pressure off the mental health system. But using them means sharing personal data with private companies, and any “fire alarm” has the potential to trigger anxiety, as well as blunt it. “We want to make sure people have the information to use the apps safely, that they have some digital literacy, and that their privacy is protected,” Ms. Myrick said.
The effort began in earnest last summer, when state officials, after a competitive bidding process, selected two companies to participate. One, Mindstrong, was founded by Dr. Paul Dagum, a computer scientist and surgeon; Dr. Rick Klausner; and Dr. Thomas R. Insel, a psychiatrist and neuroscientist who led the mental health team at Verily, a division of Alphabet Inc., the parent company of Google, from 2015 to 2017, after leaving the N.I.M.H., where he was the director for more than a decade.
“It’s been a little rough in the beginning, I have to say, and it may take a couple of years,” Dr. Insel said. “The program may have to fail at first.” Dr. Insel was recently appointed by Gov. Gavin Newsom as special adviser on the state’s mental health system — an unpaid, informal role without fiscal or regulatory authority. Dr. Insel retains his position as president of Mindstrong.
California’s other partner company, 7 Cups, was founded by Glen Moriarty, a psychologist, and its original team of therapists included Dr. Insel’s daughter (who recently left the team). 7 Cups is a digital mental health network: Clients in distress can chat, by text, with a company-trained “listener” who judges the severity of the problem and then, if needed, connects the person to a 7 Cups therapist. The company has signed on nearly 340,000 listeners in 189 countries, providing support in 140 languages. The service has reached 40 million people, the company said, about 0.5 percent of whom have needed referral.
The companies gained the opportunity to refine their products and potentially win the endorsement of California, as well as to incorporate a wealth of new patient data. Therapists and app users gained a chance to collaborate with Silicon Valley engineers to develop a valuable product for managing persistent mental distress.
“We’re doing something that hasn’t been done before, having consumers work directly with app developers,” said Kelechi Ubozoh, the peer and community engagement manager at the California Mental Health Services Authority, the state agency that chose the two apps and is coordinating the effort through the counties. “Part of the challenge is that these are different cultures that do not speak the same language all the time. It’s a big learning process.”
The rationale behind the Mindstrong app, in particular, provides a glimpse into how engineers are thinking about leveraging smartphone data to manage mental crises.
For most people, phone use tends to be fairly steady from day to day. With a week’s worth of data, Mindstrong’s algorithms can establish a person’s normal, or baseline, activity across a number of measures, including how frequently the phone is used and how quickly the person types, Dr. Insel said. Mindstrong and other tech companies that track phone usage call this average daily data set a “digital phenotype,” in a phrase borrowed from genetics.
If several measures begin to stray wildly from average, Mindstrong’s app triggers a message to the user. It takes the company about 24 hours to register a disrupted routine. The app also summarizes usage in graph form, so users can view trends over days or weeks.
“We do see it as like a fire alarm,” Dr. Insel said. “We want that alarm to go off when there’s a fire, and not when there’s only smoke. We’re working that out as we go.”
The app also includes a daily diary function: a digital card that users fill out each day, noting events, work stress, moods and quality of sleep, among other things.
“I like the diary card,” said Skyy Brewer, 30, a licensed barber in Los Angeles, who has used the diary since December to manage symptoms of depression and anxiety. “At therapy, you can go through the cards for the week and see the good days and bad ones, and figure out why your moods were off.”
Between Mindstrong and 7 Cups, Californians in the state’s public medical system could, in theory, have both an early warning system and quick access to appropriate services.
But the 7 Cups program, which started a year ago, has been delayed by the state, because of an internal state financial review and concerns about some of the company’s network of listeners. According to California officials, some listeners were having inappropriate text-chat conversations with clients, engaging with them and becoming too personal, violating the company’s rules; the issue is being addressed, state officials said.
“We use a series of techniques and programs to identify, quantify, rehabilitate, block, or ban harmful language and/or harmful individuals,” said the company’s founder and C.E.O., Glen Moriarty, by email. He added, “We take matters of confidentiality, privacy, safety and all forms of harassment very seriously.”
As for the Mindstrong app, only Los Angeles County has distributed the technology, to the few dozen people who had keyboards installed last winter. Already, about half of them have stopped using the keyboard function. Some lost interest; others had trouble adapting to the new keyboards (which work better on Android phones than iPhones). A number of users decided they liked the daily diary feature, without the rest.
“The counties are spending money on this program, saying, ‘Here, this is great, we’re giving you a Fitbit,’ and we discovered that many of our people didn’t quite understand it,” said Dawniell A. Zavala, general counsel and associate director of Mental Health America of Northern California, a patient self-advocacy group. “And they didn’t explain the possible downsides of handing over so much personal data.”
Any app maker is likely to need extensive data on thousands of users to begin to adapt its product to the many permutations and combinations of mental disorders, and to the idiosyncratic ways those are expressed in an individual’s daily behavior. And access to patients’ medical records has run into resistance in California.
“We have said no — no access to electronic medical records for Los Angeles County,” Ms. Myrick said.
It is not clear whether other counties are handing over those records and, if so, whether they have obtained patients’ consent.
In an age of hacking and data breaches, tech companies that acquire both medical and monitoring data present real risks to patient confidentiality. “If we’re excited about the potential of data, we should be equally worried about the risks, and those seem to be evolving faster than the scientific benefit,” said Dr. John Torous, director of the division of digital psychiatry at the Beth Israel Deaconess Medical Center in Boston.
“There may be guarantees the companies make about not sharing data, but if the company is sold to another company, that data goes with it,” he said. “A lot of apps have that clause buried in 13 pages in mouse print.”
App developers may yet transform mental health care. But the story so far suggests that they won’t be able to program their way out of the hard, incremental work of testing new treatments.
“The thing about California, it has a huge number of people in the public system,” Dr. Insel said. “At least it’s willing to ask: ‘Why isn’t this working? Why aren’t counties working with this amazing tech sector?’ And then do something about it.”