Design key product and interaction features of a digital platform to identify and address the symptoms that profoundly affect the quality of life of young adults with schizophrenia.
PRIME, a digital tool that helps people with schizophrenia achieve goals and engage with others for support.
More than three million people in the U.S. and 30 million worldwide suffer from schizophrenia. And yet only half of them receive psychiatric treatment. When they do, it’s usually treated with medication and one-on-one therapy for symptoms like hallucinations and feelings of paranoia. But the disease also causes other debilitating symptoms that medication can’t easily treat, like social anxiety and isolation, lack of motivation, and memory deficits.
For people suffering from those symptoms, what might seem like simple activities, like socializing, spending time outdoors, and exercising can sometimes feel overwhelming. And because of existing stigma around the disease—largely because of misconceptions about symptoms like split personalities or violent tendencies—they can become even more isolated, their physical health can suffer, their quality of life may plummet, and they’re far more likely to let the rest of their treatment regimen slip, skipping medication or therapy sessions.
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To help address all this, researchers at the University of California San Francisco approached IDEO with the idea to design a digital tool that would alleviate hard-to-treat symptoms, and more importantly, improve quality of life. This required identifying unmet needs and determining the interactions that would have the most impact on young patients.
The outcome of that collaboration is PRIME—Personalized Real-time Intervention for Motivational Enhancement—a mobile platform that helps increase motivation and engagement, and reinforces rewarding experiences.
The simplicity of PRIME belies its resourceful functions. It’s an easy-to-use mobile app, but its ability to function as the connective tissue to a trusted community of peers and professionals has huge benefits. PRIME helps patients stay motivated to stick with behaviors that boost their health, social skills, and productivity, and it provides motivational coaching from professionals, as well as a social connection with other patients.
With the PRIME app, people with schizophrenia can set goals—there are more than 500 mini-daily challenges like inviting a friend to play basketball or spending time with a family member—and can see how they’re making progress through incremental successes. Based on their personal goals and health conditions, they can choose from a customized menu of activities.
When users need help, trained motivational coaches are on hand to respond, provide cognitive behavior therapy coaching, encourage them with their goals, even to go beyond their comfort zones, and to support their connection and interaction with other users.
Tapping into its vibrant social network in order to help patients feel less isolated, PRIME prompts them to snap photos of happy moments, and to share with others what’s important to them. The PRIME community encourages each other to highlight the challenges they’re proud to have completed, or important moments in their lives. Unlike Facebook, which can be overwhelming for this group, PRIME is a closed community where users can talk openly about their challenges with others who are like them.
In its early-stage testing, PRIME showed promising improvements in patients’ quality of life, including motivation and social functioning. Most users—96 percent—chose to use PRIME until the end of the study, whereas typically 30 percent of participants drop out. What’s more, 80 percent of patients with schizophrenia achieved daily goals, and most users logged in on average 4.5 times per week, far more than the recommended once-weekly rate.
The impact of PRIME on both patients and their families has already been felt. The mother of one of the research participants was thrilled with the results. “I wish you could have witnessed Anna’s first response to seeing the faces and profiles on her phone,” the mother said. “She looked at me, smiled, and said, ‘Everyone looks normal. Everyone looks like people you see every day.’ It was as if she looked into a mirror that reflected possibility and hope.”
In an industry that relies on scientific evidence, the new PRIME platform is an example of how the human-centered design process can lead to a first-of-its-kind innovation both in academic research and in mental health. PRIME was designed based on comprehensive interviews that led to a deep understanding of the whole person rather than just her condition or her symptoms. UCSF and IDEO combined data-driven research with design to evaluate impact and feasibility, including quantitative research, custom surveys through the app, system analytics, and qualitative research.
For Dr. Danielle Schlosser, the lead researcher at UCSF who led the PRIME project, the human-centered design process was illuminating. "It showed me that in order to engage our users, we needed to provide a safe and supportive community that very much mirrored the fun and exciting process of designing the platform itself," she said. "What this resulted in was an experience that inspires them to improve their quality of life by emphasizing their strengths rather than focusing on their illness."
Early success with PRIME has led to additional NIH funding, and the expansion to PRIME-D, a platform focused on patients with depression. Though the current trial is focused mainly on feasibility and PRIME is still only available for research purposes, a next phase will begin in the fall to measure if PRIME improves motivation and quality of life compared to more traditional treatments. While the research team at UCSF is focused on expanding research collaborations, several potential healthcare partners are in the process of negotiating licenses for larger scale use of PRIME to improve outcomes for those struggling with mental health issues.