It was in 2011, after Camilo moved to Pacifica, California, a small city just south of San Francisco, when his perception of reality took a sudden, dark shift. It wasn’t the first time the 21-year-old aspiring music producer had experienced episodes of anxiety and paranoia, but this was different. Walking down the street, he felt like the protagonist in a nightmarish video game populated with mysterious characters, some good, others evil. An agonizing sense of responsibility to identify the bad guys and alert everyone else overwhelmed him.
“The most minute thing would determine it,” he says. “The sunglasses you wore, the car you drove, the way you walked.”
Over the course of three days, Camilo’s delusions and paranoia intensified. He accosted a neighbor he believed to be “bad,” yelling at her and pulling her hair. He was arrested, and spent the next three weeks detained in the psychiatric unit at Santa Clara County Jail. His mind was in chaos, his life derailed.
A terrifying diagnosis followed: paranoid schizophrenia. But despite the stigma and fear associated with the illness, Camilo felt some relief. His life had begun unraveling years before, he says, so the diagnosis helped explain his prior troubles, and it offered a path forward.
In the months that followed, medication brought his delusions and paranoia under control, and therapy helped him begin to piece his life back together. “I wasn’t going to sit around and whine and moan because I have this,” he says. “I had my whole life ahead of me.”
Then, in 2013, an opportunity came along. The University of California-San Francisco was looking to enlist young people with schizophrenia to help design an experimental new treatment device: a smartphone application that would provide patients with on-demand counseling, tools to meet treatment goals, and a social network of young people with the disease. Camilo signed on without hesitation.
The app, called PRIME, was the brainchild of Danielle Schlosser, an assistant professor of psychiatry at UCSF. Schlosser is the director of the Drive lab, a team of researchers using mobile technology to target a set of lesser-known schizophrenia symptoms. These symptoms, often neglected in traditional treatment regimens, may help to improve quality of life for people with the disease.
“The paranoia kicks in and triggers the social anxiety, which makes things worse. It can be a never-ending cycle.”
The app’s core element is a social network specially tailored to the needs of people with schizophrenia. It connects users to their peers with the illness and provides a direct line to mental-health clinicians called “coaches.” These specially trained master’s-degree-level clinicians communicate regularly with users to provide motivation and counseling in moments of need. Another feature, called “Goals,” is designed to help patients battle their motivational deficits.
Users create a profile, indicating their interests and aspirations. Based on their input, the app creates customized daily challenge goals, such as “Invite a friend to play basketball,” or “Spend time with a family member.” They are meant to help participants stay on track and pursue their ambitions. Like Facebook or Instagram, there’s a feed where users can post pictures to highlight completed challenges or important moments in their lives.
Should the app prove successful, it would add a powerful new dimension to schizophrenia treatment models. And for people like Camilo, it could mean a more fulfilled life.
The word “schizophrenia” can bring to mind for many people its so-called “positive symptoms”: delusions, paranoia, auditory hallucinations. But the disease also involves “negative symptoms,” similar to those found in depression: social anxiety, blunted emotion, a lack of motivation. (That last symptom is particularly damaging, as it often prevents patients from remaining in treatment.) These negative symptoms can have a devastating impact on quality of life. Traditional schizophrenia treatment regimens, including anti-psychotic medication, “are much better at treating positive symptoms, but are very bad at treating functioning and quality of life,” Schlosser says. “So you have people whose positive symptoms — their delusional thinking or hallucinations — are well-managed, and yet they’re not thriving.”
Talk therapy has long been a staple for treating negative symptoms, but since the disease can damage memory, appointments may be spaced too infrequently for patients to retain and apply what they learn.
“They come into the clinic for therapy once a week or once a month; that’s the traditional model,” she says. But when days or weeks pass between sessions, she explains, gaps can occur in “the translation between what’s said in that room and the real world.”
Schlosser felt there was a need for on-demand treatment that patients could rely on in crisis. In 2013, the Drive team began working on a prototype mobile app that could address negative symptoms in the moment and help users regain a sense of purpose, curiosity, and fulfillment — virtues that other people take for granted.
“You see people with schizophrenia and they might be more isolated, or have a hard time going to school or working,” Schlosser says. “But if you talk to them about what they want from life, they express the same desires as everyone else: to have friends, a job, to go to school.”
Although the dark days of lobotomies and warehouse-like mental institutions are long gone, schizophrenia treatment is still evolving. The introduction of antipsychotic medications in the 1950s revolutionized care by controlling delusions and hallucinations, causing a shift away from permanent institutionalization. But these drugs proved one-dimensional, failing to address the numerous cognitive and social impairments that often thwart recovery. People with schizophrenia continue to suffer from high rates of homelessness and suicide, have significantly lower life expectancy, and are more likely to be victims of violent crime. In his 2010 paper, National Institute of Mental Health Director Thomas Insel writes: “Our expectations of these citizens are low: they should stay out of jail, on their medications and not distress their families, friends and fellow citizens. They deserve better.”
(Photo: Brandy Truong)
“Better” may come in the form of novel treatment strategies, some utilizing mobile technology, that integrate a variety of approaches.
“We’ve learned that schizophrenia requires a number of different perspectives to bring about the best outcome,” says John Kane, chairman of psychiatry at Hofstra North Shore-LIJ School of Medicine. “It’s not just medication, it’s not just psychosocial interventions. It’s all of the above.”
The value of a multi-pronged approach was highlighted by a study published last October in the American Journal of Psychiatry, for which Kane was the principal investigator. The study followed schizophrenia patients at 34 clinics for two years, comparing conventional treatment to a comprehensive treatment regimen that incorporated individual and family therapy along with education and employment support. The study found that patients given the comprehensive regimen showed decreased symptoms, increased engagement with work and school, and improved quality of life.
“The amount of each ingredient is going to depend to a large extent on the patient’s particular situation,” Kane says, suggesting that, because mobile technology offers better access and flexibility, an app like PRIME (for Personalized Realtime Intervention for Motivational Enhancement) could play a major role in the future of schizophrenia treatment.
In late 2013, with a prototype of PRIME completed, Schlosser’s team assembled a focus group comprised of young people with schizophrenia to give the app a try. The feedback was mixed.
“They liked the idea, but when we showed them the prototype, they really hated the design,” Schlosser says with a laugh. “It was great. We totally failed.”
That failure taught her team two lessons. First, the app needed to be engaging; it couldn’t feel sterile or, more importantly, make the users feel like they were suffering from a sickness. That is, it couldn’t interact like medical literature. Second, to design an effective app, people with the disease needed to be partners in the design process.
With funds from the NIMH and UCSF, the Drive team decided to partner with the design firm IDEO to bring the design and functionality of the app to the next level. Along the way, they brought in another group of 15 stakeholders, including six young people with schizophrenia, their family members, treatment providers, and research experts.
Camilo was one of those six. The team interviewed him and his fellow “co-designers” to find out what motivated them to improve their lives, and what design features mattered most.
When the Drive team finally rolled out PRIME, it was a far cry from the original prototype.
Meanwhile, Camilo had moved back to his former home of Katy, Texas. While his condition was improving, there had been setbacks. Though he’d secured a new therapist in Katy, he quickly severed ties with her due to what he calls a personality conflict. And though surrounded by a supportive family, none of them could relate to what he was going through. He felt alone with his anxiety. He remained a homebody, and began putting on weight.
“I would go to a restaurant and be paranoid and scared as hell,” he says. “If a woman looked at me, instead of thinking, ‘Maybe she’s just flirting with me. Maybe she wants to talk,’ I’d think, ‘Why is she looking? What does she want?’ The paranoia kicks in and triggers the social anxiety, which makes things worse. It can be a never-ending cycle.”
When he got a phone call from the Drive team in 2014 asking if he’d like to participate in a three-month trial of the app he’d helped develop, he quickly agreed.
With PRIME installed on his phone, Camilo suddenly felt like he had a lifeline in his pocket. When his anxiety spiked, he reached out to the coaches who gave him on-the-spot therapeutic advice. Using the daily challenge goals, he began to lose weight and socialize more with his brother, and the PRIME network connected him to other young people who shared his diagnosis.
“Just last Friday I went to see a couple of DJs in Houston,” Camilo says. “I posted that I was going by myself, and that I was trying something new. And everybody was like ‘All right! Good for you.’ It felt great.”
Schlosser hopes the app will also counteract the shame that poses a barrier to treatment. By facilitating peer-to-peer interaction, she believes PRIME can help users break down the internalized negative images that can keep people from reaching out for help.
She pointed to the case of one study participant, a young man who had received the diagnosis six months earlier. He was scared. He’d never met anyone with schizophrenia, so his only perceptions came from media depictions of violent people with the disease. At his counselor’s encouragement, he reached out to a peer who had received the diagnosis a few years prior and was further along in his recovery process. The peer messaged back:
Hey bud … I think this disease is definitely a huge challenge that we all sort of have to face. But I think it’s a type of challenge that can be overcome. When I first got the diagnosis, I was a wreck. Depression as well as an onslaught of negative symptoms…. I think it’s important to slowly get ur life back together step by step. As u progress, u will realize things really are not all that bad and that this disease is just one of the bumps in life that u will have to overcome.
“I get so excited when I see interactions like that,” Schlosser says. “It held so much more weight than his coach or psychiatrist conveying that message ever could. It means a lot to me that we’re creating a safe space for people to engage on this.”
Such novel strategies to address schizophrenia symptoms are valuable, Kane adds, but the proof will be in the research: “As a provider, I’d want to know that this actually works. There are thousands of apps out there that have not been adequately tested. We’ve got to figure out what works and what doesn’t.”
Now under way for 20 months, the PRIME study has shown encouraging results, Schlosser says. With most mobile interventions, the retention rates range from 10 percent to 30 percent. Only one of 36 participants dropped out of the randomized control PRIME trial. Participants (some medicated, some not) logged into the app an average of four times a week and completed their challenge goals at a rate of over 80 percent. Those in the control group were given standard care, and then offered enrollment in PRIME when the trial ended.
While the current trial is focused on feasibility, the next phase, slated to begin this fall, will measure the extent to which PRIME improves quality of life and motivation for users compared to traditional treatments. After that, Schlosser hopes to investigate the app’s potential as a supplementary treatment in community-based health clinics that may lack the resources to adequately treat young people with schizophrenia. Schlosser is confident that they will license PRIME and get it into the hands of people with schizophrenia as early as next year.
As for Camilo, he says his life is largely back to normal. He’s recently created his own music label, ShineDark Music, and is releasing records. “I go out every weekend,” he says. “I have friends. I talk to people. I socialize. I’m not scared anymore.”
“The cliché is that if you’re schizophrenic you can’t do anything, you’re just disabled,” Camilo says. “But I like to think that I’m just like a regular person who just happens to take a pill once a day to keep me running — and that’s it.”
