Prime, a social networking app for people with schizophrenia, aims to improve quality of life
The app connects people who have schizophrenia with peers and coaches
People with schizophrenia often say the disease is an isolating one. They can struggle to connect with loved ones or to find people who understand what they’re dealing with. But a new app might help them find the support they need to improve their lives.
For Rhiannon Crandall-Martin, the voices and hallucinations started during her sophomore year in high school, but they were never very extreme. “I didn’t really pay attention to them. If I saw something or heard something, I could tell myself it wasn’t real.”
Things were fairly manageable through the rest of high school. After college, she found a job working from home, for a call center. But the hallucinations and voices were getting more and more aggressive.
“There was a very small part of my brain that told me that they weren’t real. But the majority of my brain said they were real. They said, ‘You’re not safe. Your loved ones aren’t safe.’ ”
’I’m the problem’
Crandall-Martin remembers thinking, “You have to protect your family from yourself, because I’m the problem.” The paranoia sent her down a path of self-harm.
She’s not sure exactly what happened. The details are hazy. “One of the symptoms I have is memory loss, so I kind of lose track of time.”
But in 2014, at age 21, she found herself in a psychiatric hospital.
“I hurt myself while I was at the hospital. I just remembered that I had bandages on my arms, and I had no idea why,” she recalled. “It was so stressful at the time. I couldn’t differentiate reality from delusions.”
With the help of medication and therapy, she was able to regain control, and she was diagnosed with schizophrenia.
Crandall-Martin was in the hospital for two months. But when she left, she broke down. “I had no idea what I was doing. They said, ‘keep our number. You’ll be OK. You’re doing fine.’ But I didn’t believe them.”
The first three months out of the hospital were a struggle. She says much of the year was spent calibrating the dosages of her medications. “I’ve been on so many dosages and types of medications. I’ve had so many side effects. But I have a combo that sort of works for me now, but I need to be recalibrated when the paranoia and the anxiety start working again.
“Every once in a while, I would see something. Or I would hear something, and a cold sweat comes over me. ‘Oh, my God, it’s happening again,’ ” Crandall-Martin said.
She had to track her delusions: Are they getting stronger? Are they flickering by? “It’s really anxiety-inducing,” she said of monitoring the voices and hallucinations.
Tracking the hallucinations was depressing, she said. She’d ask her doctors, ” ‘Can’t you just give me another med to just make them go away?’ I just wanted them to stop when it would flare up.”
Then, while looking for new work, she came across an ad on Craigslist looking for study participants. “Feeling Unmotivated? Recently diagnosed with schizophrenia?” it read. “It really interested me. It definitely spoke directly to me,” she said.
As part of the study, Crandall-Martin received an iPhone that was loaded with Prime, a social networking app designed to create a community for people with schizophrenia.
Danielle Schlosser, a professor of psychiatry at the University of California, San Francisco, has worked with such people for the past decade. “I talk to many people who say things like, ‘He would go to college, he was really successful, but he’s in treatment now. It’s such a big deal to get him to go outside and take a walk or connect with his old friends.’ ”
But when actually speaking to the patient, Schlosser said, she would hear something different. “They say they want to go outside, but it feels like a lot of effort.”
A new way of thinking about treatment
Schizophrenia is a leading cause of disability in the United States: About 3.5 million Americans have the disease, with most people developing it between their late teens and early 20s. The roots of the disease aren’t completely understood, but it includes a genetic component. Half of all those diagnosed with the disease will never receive any treatment.
Treatment has long focused on antipsychotic medications and on really difficult-to-treat symptoms, Schlosser said. Instead, she wanted to focus on improving people’s quality of life, encouraging and inspiring those patients.
As head of the university’s Digital Research and Interventions for Volitional Enhancement, or DRIVE, lab, she and her team saw social networking as a potential tool to connect people who felt isolated.
“Traditional methods aren’t more successful because they require you to come into the therapy office for an hour, every few weeks, and then take all that information and remember it and access it at critical moments in life,” Schlosser explained.
Instead, the Prime app essentially puts support at the patient’s fingertips, at a moment’s notice.
“They needed to have a way to have this quick full list of education, connection, in a very brief interaction,” she said.
But the team had to be careful not to appropriate Facebook, because many of Schlosser’s patients said they felt uncomfortable there or felt threatened by people’s happy posts. So with the help of the design firm IDEO and more patients, Schlosser and the DRIVE team came up with Prime.
Schlosser said the contributors were instrumental to the app’s success. “I was so immersed in the science, I hadn’t thought about the experience, and that was a real failure.” Instead, they humanized Prime, thinking about it as a friend: What did they want in a friend? In a support system?
Prime is designed much like other social networks: A patient establishes a profile, with their interests and symptoms, and gets matched to coaches and other patients who may be going through similar experiences. Patients can also add goals, such as “go outside today” or “remember more positive moments.”
Crandall-Martin’s profile included such goals as “mop the kitchen” or “go to the movies on Friday.”
“It’s really neat when you complete a goal, it’s a real pick-me-up. For some of us, it’s a huge achievement,” she said.
“If I had flareups, instead of rushing to my doc saying I needed new meds, I would go to the app and type in, ‘I’m experiencing this, is anyone available to talk or want to talk?’ And we’d just go back and forth,” Crandall-Martin said.
She could immediately access a network of peers who could offer suggestions or empathize with her concerns, as well as coaches who could work with her through a difficult moment. If her assigned coach didn’t have a technique that worked, she could work with another.
“If I was having a panic attack, I could whip out my phone and just come back to Earth, come back to reality. No need to have a panic attack. I could breathe and get through,” she said.
Many app users report improvement
During the six-month study period when Crandall-Martin was using Prime, her anxiety medication dosage went down, she said, and she went to fewer counseling sessions.
Schlosser and her team found that over the study period, patients had a two- or threefold increase in engagement, whether they were accessing coaches, interacting with peers or just logging on.
The team created a similar app for depression, Prime D.
By the end of the six-month Prime D study, patients reported a 50% reduction in depression severity, using the PHQ-9 (PDF) scale. After the first four weeks, 75% of patients said the app had helped them meet a personal goal. By eight weeks, that number was 90%.
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Now that the Prime study is over, Crandall-Martin said she misses using the app: “I didn’t think it would have such an impact on my life. I miss having that tight-knit community.” She said her medication dosage has increased.
Soon, Schlosser and her team hope to publish the results of their study and to get Prime and Prime D on the market.
She said the work has reminded her to think of patients as people first. “It might seem basic, but if our goal is to improve people’s lives, it can’t be just about treating symptoms but treating the whole person. That might look like talking to the patients about who they are and what they want instead of diving into what’s wrong.”