Based on an average incidence of psychotic illness of 272 per 100,000 people each year, approximately 107,000 California residents are estimated to experience a first psychotic episode each year. California currently has 30 active programs providing Early Psychosis (EP) services across 26 counties. However, these programs are not identical. They offer different services, follow different treatment models, and measure treatment impact differently.
EPI-CAL aims to improve the quality of services and measure the impact of treatment. To do this, we have created a learning health care network (LHCN) of California EP programs. The goal of this network is to standardize practice and support knowledge-sharing. To make evaluation of these different EP programs possible, network members have agreed to gather the same information across the same timeframe. Clients, families, and providers will provide information by answering surveys at regular intervals throughout treatment. Surveys will be offered in 13 different languages to meet the needs the diverse communities represented in the LHCN. Surveys will ask about how clients are doing at work or school, how their social life is, and how they feel about their future.
The technology used by the LHCN will bring the information provided by clients and families back into their care. The providers will have access to their clients’ data to use as part of their regular appointments with clients and families. This may empower clients to use their own data in care decisions.
EPI-CAL will also allow programs to learn from their own data and from each other. Program management will have access to all of the survey data from their program. They can compare their whole clinic to the network as a whole. They can use this group data to evaluate the impact of program services and look for areas of strength or for improvement.
EPI-CAL started as a collaboration between California counties (Los Angeles, San Diego, Orange, Solano, and Napa) and One Mind to develop a Learning Health Care Network for the EP programs of those counties. A grant from NIH brought the California LHCN into the national network of EP programs, EPINET. This grant also made it possible to add additional county and university EP programs into the LHCN. Being a part of EPINET gives clients and programs the opportunity to contribute to the national conversation on how to inform and improve care for individuals with early psychosis across the US.
California has the only statewide initiative examining the clinical high risk (“prodromal” population)
Beehive is the data collection and visualization software platform that Learning Health Care Network Early Psychosis (EP) programs will use to incorporate information about a client’s recovery and wellness into their mental health care. Beehive both facilitates the collection of this recovery and wellness information and allows program staff and providers real-time access to it, with the ultimate goal of incorporating this information into care. Clients, family members or support persons, and providers complete surveys every six months throughout the client’s time in the program.
Data Collection: Clients and their self-identified support persons will complete surveys about their experiences. These surveys will ask about symptoms, treatment, and recovery. Individuals will complete surveys on a tablet at the clinic for in-person visits, or on their computer or smartphone if engaging in telehealth. EP providers will also complete surveys in the web application.
Data Visualization: The web application will provide clinic staff and providers with data visualizations of completed surveys. EP providers are encouraged to share these visualizations with clients during appointments. Incorporating this data into care may facilitate conversations regarding treatment goals, encourage shared decision-making, and enhance clients’ involvement in their care. Clinic administration can also use this data to monitor treatment outcomes and consider factors which impact recovery.
Beehive is being developed in collaboration with Quorum Technologies, Inc.
The Lived Experience integration team is a team of individuals with lived and living experience with psychosis who are involved in all aspects of the EPI-CAL project.
With core leadership comprised mainly of people with and research or clinical training in addition to direct experience as mental health service users, we strive to improve quality of service through listening to stakeholders and community partners with a focus on empathy and inclusivity. We stand for person-centered, trauma-informed care that is non-coercive and allows individuals to make informed choices about their care. We believe in cultural humility and that individuals should hold both themselves and the system accountable and approach work and life with a mindset for growth and learning. We strive to model and encourage a healthy work/life balance whether you have lived experience or not. And we seek to foster spaces for service users to meaningfully impact the direction of the Learning Health Care Network (LHCN), training and technical assistance center, and integration of people with lived experience in leadership, research, and/or administrative capacities. There should be nothing about us without us and we are here to help that become a reality.
Current projects of the Lived Experience Integration Team include:
To contact the EPI-CAL Lived Experience Integration team, email LEITeam@groups.ucdavis.edu
Our mission is to elevate the voices of people with lived and living experience of psychosis and facilitate their substantive presence in all areas of early psychosis work in ways that transform historically disempowering narratives about mental health and treatment.
Our vision? A world where people with lived experience are valued, treated as equals, and where our voices directly and meaningfully guide psychosis care, research, and public perception.
* Interested in joining our online community, advisory council, or team? Find out how to get involved here.