News

By Kim Barnhardt

Teamwork, collaboration, inclusion, openness and a passion to make a difference are woven through an early psychosis program that helps put youth and young adults on a path to recovery. Since 2020, the Early Psychosis Intervention Spreading Evidence-based Treatment (EPI-SET) research project has supported about 1300 young people experiencing early psychosis, a sudden onset mental illness that can be terrifying, and usually occurs during a time of much change and many milestones in adolescence or early adulthood.

With a commitment to patient and family engagement in research and treatment, the EPI-SET program at Toronto’s Centre for Addiction and Mental Health (CAMH) has built infrastructure to support young people, patients and their families not only in Toronto but across Ontario. Funding from the provincial Ministry of Health, to the tune of $19 million granted in fall 2024, is the most recent validation of the program’s impact, and will fuel its expansion.

Conceived of as a research project, with OSSU funding for an implementation trial, EPI-SET aimed to evaluate implementation of NAVIGATE, a treatment model originally launched in the United States that offers comprehensive care for early psychosis in community mental health settings. The research team secured CIHR SPOR funding to expand beyond academic centres as part of the study, with 6 diverse sites in Ontario from Durham, Niagara and Waterloo in southern Ontario to Sudbury, North Bay and Thunder Bay in the province’s north.

Led by principal investigator Dr. Aristotle Voineskos, Senior Vice President, Research and Science, along with Dr. George Foussias, Scientific Director of the Slaight Family Centre for Youth in Transition and Chief of the Schizophrenia Division at CAMH, and a large team of researchers and partners, the EPI-SET study showed results.

“We were successfully able to train and deliver NAVIGATE across different settings,” said Dr. Foussias, also Provincial Clinical Lead, Psychosis and Schizophrenia for the Mental Health and Addictions Centre of Excellence, a centre focused on building a comprehensive, connected system for mental health and addictions care across Ontario. “This shows to us that it’s not just limited to academic and hospital settings but community settings – by delivering this model of care, teams are better able to deliver care in line with early psychosis treatment standards.”

During the study period from 2019 to 2025, the team trained over 180 clinical staff who delivered NAVIGATE to about 1300 youth aged 16-35 years.

From the outset, patients and their families were key partners in EPI-SET, with family and youth advisors engaged from the outset to co-design and support work throughout the project.

Dr. Lina Chiuccariello, Director of Clinical Research, CAMH, and teams across CAMH have spent years building the supports to engage people with lived experience and families in research, developing best practices for engagement. They focused on training patient and family partners as well as researchers to build capacity, foster collaboration, and raise awareness of this work across the organization, recently showcasing the work at CAMH through their inaugural Research Engagement Day.

“CAMH has a large network of youth, patients and families with lived experience interested in being partners on both research projects and clinical initiatives,” said Dr. Chiuccariello. “If you’re starting a new project and want to engage people with lived experience, the network is eager to get involved and our teams can support in connecting you and ensuring a meaningful partnership.”

Her team focuses on meeting individual needs of researchers and patient and family partners, from consultations on the model of engagement to setting up project charters or developing full advisory committees. Key to this is training, from defining research and the many associated terms to shared expectations from lived experience advisors and researchers as well as support throughout the duration of the project. It could be described as a “bespoke” approach, matching partners with lived experience to research projects based on partner interests and experience and on researcher needs. An infrastructure to support youth engagement originally launched the work within the organization with the INNOVATE Research guide developed at the McCain Centre that set standards and practice around engaging youth.  A range of tools and supports followed, some related to the EPI-SET project, such as explainer videos for partners, and others, such as published best practice guidelines on engaging people with lived experience. 

“We have tried to be broad in building our networks of people with lived experience and caregivers – some of our recruitment has been specific to people’s specific mental health concern and we have quite a diversity across the research at CAMH,” said Dr. Chiuccariello. “We have standing advisory committees to support strategic initiatives and we try to be intentional in seeking out diverse representation across our network and committees.”

To date, they have networks of more than 625 advisors with lived experience, families and caregivers, and have assisted over 150 projects in 2024/25, and currently employ more than 27 people with lived experience to directly support this work.

This infrastructure to support youth, patients and caregivers has enhanced the success of EPI-SET, now moving to scale up with funding from the Ministry.

“Paying attention to the local environment and engaging local teams and local leadership in implementation is critical,” said Dr. Foussias, “and having enough staff to deliver a model of care is important. That’s why funding from the Ministry and the work with the Centre of Excellence is essential as it allows us to work as a system and deliver quality care.”

The team used the Extension of Community Healthcare Outcomes-Ontario Mental Health (ECHO-ONMH) to build a virtual community of practice for training and knowledge sharing that enabled the spread and scale of EPI-SET in Ontario.

“Another important consideration is the need to support teams in delivering care and reconfiguring things to deliver care. It’s not just based on how big the team is – we’ve learned that small but mighty teams can work – some did an amazing job, not only because of support but because of local leadership.”

He adds that leveraging technology to provide virtual care for patients and their families has huge value.

“Being able to provide virtual care for patients and families is a powerful way to engage families. We can leverage technology to bring people together and that can be just as effective a way to deliver care.”

For the 1-2% of the population who will experience early psychosis in their lifetime, most of them in their teens and early adulthood, this program can be a game-changer.

“I think we are at a really exciting time for early psychosis care in Ontario. We’re able to move to implement evidence-based care in a consistent way for all Ontarians, regardless of where they receive care, and meet the needs of young people and their families,” said Dr. Foussias.

Read related article Building a mental health system in Ontario.