Schizophrenia is behind only heart disease in U.S. health care costs. People with schizophrenia and other psychoses are at high risk for problems such as homelessness. And contrary to public perception, they are far more likely to be the victim of a crime than a perpetrator.
They are also tragically underserved. It’s commonly believed that psychoses are untreatable or incurable or both. Most people who experience a first episode of psychosis go for more than a year without treatment.
Piper Meyer-Kalos, director of the Minnesota Center for Chemical and Mental Health in the School of Social Work and adjunct faculty in University’s psychiatry department, has been working since early in her career to improve recovery and outcomes for those with serious mental illness. She became part of a national research team funded by the National Institute of Mental Health (NIMH) that developed an early- treatment program that dramatically improved outcomes after first-episode psychosis.
That program evolved into NAVIGATE, a multi-component, team-based treatment study that followed 400 people for two years. The program components included (1) medication management, (2) supported employment and education, (3) individual resiliency training, and (4) a family education program. The family component is important because psychosis commonly emerges when people are teens or young adults. A large percentage are still living with their families, important allies in a confusing and frightening period.
The study found that the time between the first episode of psychosis and the point where the person begins treatment makes a big difference in treatment outcomes.
What is psychosis?
- • Feeling like the world is unreal in a way that is hard to describe to others
- • Thoughts might change—they may speed up or slow down a lot
- • Hearing or seeing things that may be unusual or not shared by others
- • Experiencing an upsetting, but very convincing, belief that something is true
Symptoms of psychosis require thorough evaluation by a professional. When a person first shows signs of psychosis, this is called first-episode psychosis or early psychosis.
Signs I might be experiencing psychosis
- • Performance in school, work, or family life is rapidly dropping
- • Spending a lot of time alone, in my room
- • Doing or saying things that seem strange, even bizarre
- • Experiencing feelings of sadness or depression
- • Feeling irritable
- • Having problems sleeping
When Meyer-Kalos began working on a project to improve outcomes for the state of Minnesota, her first priority was to train NAVIGATE teams at several physical locations where those experiencing a first episode of psychosis could go for comprehensive treatment. Teams, including social workers, are made up of a project director to oversee the program and provide family education, a therapist, a supported employment and education professional, a prescriber—a psychiatrist or a nurse—and sometimes a case manager.
The University of Minnesota had already formed a first-episode program. New teams were formed in St. Louis Park and downtown Minneapolis. More are envisioned, though the workforce shortage in many areas of the state makes it difficult to find the needed professionals.
With several teams up and running, the next task was to spread the word and get people to the sites nearest them.
Meyer-Kalos’s colleagues in Sweden were developing an app to connect mental health clinicians to evidence-based interventions. Could she do something similar for the project in Minnesota?
That’s when she was introduced to a start-up team based in CEHD.
“A huge part of our process is understanding the needs of the users,” says John Behr of Educational Technology Innovations (ETI). “That drives everything.”
For Meyer-Kalos’s project, those users are people experiencing first-episode psychosis, their families, and health professionals. Together, she and the ETI team realized that the public health awareness goals of the project, combined with their target users, made a mobile-first website a better solution than an app. It would be called We Can Navigate, consistent with the team approach of NAVIGATE and also reminding every user that they’re not alone.
They chose calming colors and a very flat design. And instead of photographs of people—which Meyer-Kalos knows from experience would risk eliciting a response of “That’s not me,” alienating a person experiencing psychosis—designer Viet Do drew by hand a variety of friendly faces that are clearly not real, yet welcoming.
“ETI came with the experience to really walk you through,” says Meyer- Kalos. “John asked, ‘How do we know, when people are reading what’s on the site, that they are understanding or connecting with the content?’”
Dissemination and digital marketing are also part of the services provided by ETI, so when the website went live in March, a whole roll-out to various stakeholders and potential users was in place.
ETI uses the Agile method of project development to keep the process flexible and responsive and make consistent progress. Behr brought years of experience when he joined ETI in 2015, excited to shift from the world of private-sector companies to projects like We Can Navigate.
“The environments we build have a profound impact, from K-12 students to someone suffering ambiguous loss or first-episode psychosis,” says Behr. “That’s what drove me to join ETI. We also have an impact on the research being done here. As a faculty member, you can build sustainability and reach to larger audiences for each project. That’s powerful!”
Read more from Meyer-Kalos on the CEHD Improving Lives blog.
Also from ETI
DEXALYTICS TM, a cloud-based software developed in ETI that leverages body composition data from dual-energy X-ray absorptiometry (DXA) scans, signed an agreement in February that will make Massachusetts-based Hologic, Inc., the exclusive North American provider of Dexalytics:TEAMSTM. The partnership provides the sports science and human performance industry with the first solution to harness the robust body composition data from DXA scans, compare it to sport- and position-specific standards, and provide actionable information that can help collegiate and professional trainers, coaches, and medical staff train better, healthier athletes.
Story by Gayla Marty | Illustration by Viet Do | Photo by Mandy Dwyer | Spring/Summer 2018