California is using apps to monitor mental health patients. Is that 'cool'—or just 'creepy'?

California recently launched a multi-million dollar effort to test whether mobile apps can make mental health treatment accessible, and prevent a crisis before it occurs—but early testing suggests that privacy concerns as well as issues that stymie conventional mental health treatments present obstacles to success, Benedict Carey reports for the New York Times.

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Inside California's new pilot program

There are more than 10,000 mental health apps on the market, but little is known about their effectiveness.

So last year, California kicked off an effort to gain a better understanding of how Silicon Valley could better help patients whose mental health care is managed through the state's public mental health system. The more than $100 million taxpayer-funded pilot program involves officials from 13 counties and two cities, and patients—many of whom have been diagnosed with borderline personality disorder—who receive care through Los Angeles County's mental health network.

After a competitive bidding process, California officials picked two companies to participate in the five-year pilot program: Mindstrong—which was founded by a group of doctors, including Thomas Insel, a former director of the National Institute of Mental Health who later led the mental health team at Verily—and 7 Cups, which was founded by psychologist Glen Moriarty.

The companies each approach mental health in different ways.

Mindstrong requires users to download an alternate keyboard that the company uses to monitor patients' "moment-to-moment" to identify times of potential crisis, Carey writes. The idea behind the Mindstrong app is that it can assess participants' smartphone behavior and use that to determine when a person's behavior is veering from normal and alert the user via text. Mindstrong—and others that track phone use—term this a "digital phenotype."

Lynn McFarr, director of the cognitive and dialectical behavior therapy clinic at Harbor UCLA Medical Center, which provides care for people in the Los Angeles County system, said, "People with borderline personality disorder have a very difficult time identifying when distress is very high." She added, "If we can show them, in this biofeedback fashion, that the signals 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."

7 Cups, meanwhile, connects users to a digital mental health network. The company relies on a network of nearly 340,000 company-trained "'listeners'" around the world to talk with users via text and determine if the person should be connected to a therapist.  

Together, Carey writes, the two companies could provide Californians in the state's public medical system with "both an early warning system and quick access to appropriate services"—at least "in theory."

Mental health app pilot gets off to a rocky start

But the initial results suggest "the road will be slow and winding," as officials, providers, and tech leaders grapple with "questions about effectiveness, privacy, and user appeal," as well as issues like low recruitment, informed consent, and long-term use, that have plagued drug trials for years.

For example, the 7 Cups app rollout to California patients has been delayed by the state in light of an internal state financial review and concerns that some of the company's listeners were not handling chats appropriately and becoming too personal, Carey reports.

While the Mindstrong app did launch, it has faced its own challenges, Carey reports. Several dozen patients in Los Angeles County had the Mindstrong app and keyboard downloaded on their phones last winter, Carey reports. Some users report enjoying some of the apps functions, like its daily dairy.

Skyy Brewer, a licensed barber in Los Angeles, who has used the diary since December to manage symptoms of depression and anxiety, said of the diary card, "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."

But, overall, about half of the users already have stopped using the keyboard. According to Carey, some patients simply lost interest, while others struggled with the technology.

The privacy question

Along with individual problems with the apps, the project overall has raised questions about patient privacy and informed consent, Carey reports.

To refine their algorithms, mental app makers will need "extensive data on thousands of users," Carey writes, and there has been resistance to sharing patient data in California.

According to Keris Myrick, chief of peer services for Los Angeles County, who has been highly involved in the project, officials "have said no—no access to electronic medical records for Los Angeles County."

Myrick noted, "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." 

Further, between hacking, breaches, and the potential of data changing hands in the event of acquisitions, there are plenty of areas where patient data could be used in ways patients didn't think possible, Carey reports.

John Torous, director of the division of digital psychiatry at the Beth Israel Deaconess Medical Center in Boston, said, "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." He noted that while companies may have guarantees about data sharing "if the company is sold to another company, that data goes with it."

All of this will take time, Carey reports. As Myrick said, "We need to understand both the cool and the creepy of tech" (Carey, New York Times, 6/17).

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