I was sitting in an office in the back of the Centerstone mental health treatment facility in Louisville, Kentucky. Beside me were an old PC tower and a laptop, both cracked open, wires unspooled and hard drives lying under the flickering ceiling fluorescents like animal innards in a high school biology class.
Two men sat across from me: Lon Moore, a Centerstone client with schizoaffective disorder, and his peer support specialist, Dante Murray, a leader in the local mental health community, who also lives with schizophrenia. To both of them, this mess of circuitry and gadgetry had been instrumental to their recovery.
Dante teaches clients with mental illness basic computer literacy, which sparked Lon’s passion for tinkering — hence the deconstructed PCs. For Lon, despite battling paranoia that conventional wisdom says technology might trigger, designing basic gadgets has become therapeutic.
Personally, Dante has found the most helpful device in his recovery to be a smartwatch, which monitors his vitals, tracking sleep and exercise.
Dante’s and Lon’s gravitation toward technology after diagnosis isn’t peculiar. In 2014, the National Alliance on Mental Illness (NAMI) commissioned a survey of 457 schizophrenic adults. The poll asked them a series of questions about how their condition intersected with their use of technology. Nearly three in five respondents said they used technology to cope with their symptoms, drowning out voices with headphones, for instance. About two in three said they anticipated technology would become a bigger part of their recovery in the coming years.
That level of comfort with technology suggests more can be done. Mental health experts say harnessing tech’s benefits could lead to powerful results in helping people live more-normal lives. If nothing else, tech could be a strong supplement for the treatment of mental illness.
“I’d like to see something more holistic,” Dante said, painting a picture of phones, wearables and smart home tech all working together to predict and prevent psychotic episodes.
Turns out, we’re not necessarily so far from that reality.
“For a long time there was this notion of a digital divide,” said Dr. John Torous, the co-director of the Digital Psychiatry Program at the Harvard-affiliated Beth Israel Deaconess Medical Center in Boston. People assumed “that patients with a serious mental illness either did not own technology like smartphones or tablets, or if they did, they wouldn’t want to use them, because it would make them upset, paranoid or afraid.”
NAMI’s survey undermined this theory, said Torous, and it was just the tip of the iceberg. When the poll was conducted, in August 2014, the explosion of smart home technology was still on the horizon. Apple’s smart home platform, HomeKit, had just been announced in June, and Amazon’s digital assistant, Alexa, wouldn’t become available till November. In the years since the study, technology has surrounded people in the home more than ever before.
“We’re not really at the point where AI or chatbots will be able to diagnose or treat mental illness,” said Torous. But he thinks “behavioral nudges” like scheduling lights or TVs to turn off at certain times, could support a more holistic treatment program.
Devices like the Apple Watch, Fitbit and other wearables have already introduced features not only to monitor user vitals but also to connect with smart beds and scales, all to gather data.
Furthermore, with fridge technology emerging that lets you order groceries, and the current availability of connected lights like Philips Hue or Lifx, smart home technology many consumers see as a luxury could become instrumental to recovery for others. It could transform treatment into a daily, participatory process, rather than a series of therapy sessions separated by weeks or months.
Smart home technology could be “a tremendous asset,” Torous said.
Most of this technology is already on the market, or will be soon. So it’s not so much a question of when we’ll have the hardware, but rather when we’ll have a platform to integrate that hardware to treat mental illness.
The good news is, research psychiatrists and app developers might already be on the right track.
Back in Boston, Torous is working in collaboration with JP Onnela at the Harvard School of Public Health to develop Beiwe, a passive app that tracks how users engage with their phones. This data — GPS location, accelerometer information, screen-off and screen-on time, and so on — is compiled and coded to monitor behaviors that might warn of an oncoming episode.
“Phone use is not a perfect proxy for sleep, [for example],” Torous said. “But [for] some people it’s going to be accurate. [And] if we can get good approximations of sleep for patients with schizophrenia…we can know when to push sleep intervention. Or if we can get a better idea about mobility, we can push exercise intervention.”
For now that intervention mostly depends on family members and clinicians. But Dr. Dror Ben-Zeev, head of the Mobile Health for Mental Health program at University of Washington, Seattle, said that might change.
Ben-Zeev and his team have designed a different app, called Focus, which provides users with “quick and dirty” methods for coping with their symptoms as they occur.
Dr. Ben-Zeev gave an example in which a user hears voices predicting the future. Focus would prompt the user to test the voices, for instance, by asking them to predict the next few cars to pass by — their colors and order. When the prediction fails, then the following question would ask whether the voices might be fallible.
“What we find,” said Ben-Zeev, “Is that over time… people certainly experience less distress if they use the Focus strategies, and in some cases, they actually wind up experiencing [fewer] voices altogether.”
Though Ben-Zeev says the ideal scenario will include a support system of family and therapists, that’s not necessary for getting at least some level of positive treatment on the fly.
Combine Ben-Zeev’s digital treatment, Torous’ phone-usage tracking, a potential wealth of data from wearables and the behavioral nudges offered by existing smart home tech, and an image begins to emerge that reflects Dante Murray’s “cohesive” digital treatment experience.
One big outstanding question: When will everyday people like Lon and Dante actually see such a system come together? Torous doesn’t offer a timeline, but he is optimistic.
“I am sure we will see…these combined,” he said. “As we learn more about the best use cases and validity of…data gathering and nudges, those successful combinations will be very exciting and powerful.”
Ben-Zeev and Torous have a tough road ahead. Their products could easily get lost in app stores, where more than 165,000 wellness apps clog the market. There’s no correlation between the quality of an app and its popularity in the app store, Torous said. Without some regulatory body such as the US Food and Drug Administration certifying some apps and not others, finding effective software in such a clotted market becomes a major challenge.
An alternative route for developers could be packaging apps into existing insurance coverage — like one company, called AbleTo, does. According to AbleTo Chief Medical Officer Reena Pande, “Making sure [the tech] is covered is key.”
But with nearly 80 percent of the US population owning cell phones, apps have a unique ability to reach a wide range of users. Wrapping them into existing coverage models seems to waste that inherent accessibility, especially when more than 40 percent of those with schizophrenia right now aren’t receiving any form of care.
And all these challenges come before Ben-Zeev or Torous even consider integrating with existing smart home hardware.
Ben-Zeev said the clinical studies of his Focus app may be coming to a close, but another stage of research, on getting digital treatment to people effectively, is only beginning. For now it’s still unclear how the best technology will reach those with the greatest need.
Back in Louisville, Dante Murray was sitting in a chair, showing me Excel skills on a 10-year-old desktop. These are what he teaches to help Centerstone clients become more employable. When I asked if phones or tablets — devices with touchscreens — might help people he knows with mental illness who lack computer literacy, Dante swiveled to face me.
“Look, that would be great,” he said, seeming to indicate all the tech we’d discussed that day. “But the fact is…I have to work with what I have.”
By David Priest