New Network Collects Real-Time Data to Improve Treatment of Early Psychosis

A 20-year-old college student diagnosed with a first episode of psychosis leaps to his death from a high window.

Was his death the result of the fear, despair, and shame that accompanied his diagnosis and its frightening symptoms? Or was it the result of psychosis itself—a conviction that he could fly or a command hallucination? What are the factors leading to suicide among patients in early psychosis? And how can a suicide safety plan be implemented for patients who are experiencing a first episode of psychosis and aren’t able to acknowledge that their behavior is suicidal?

Those are some questions being asked by researchers participating in the National Institute of Mental Health’s Early Psychosis Intervention Network (EPINET).

EPINET is a “learning health care network” consisting of 101 community-based early psychosis programs and eight regional hubs that coordinate the programs across 17 states. The participating clinics use the EPINET Core Assessment Battery at baseline and follow-up for gathering a wide range of clinically relevant data on first-episode psychosis (FEP). Those data are collected by the National Data Coordinating Center, operated by Westat.

EPINET is still young—the National Institute of Mental Health (NIMH) began funding the network in the fall of 2019—but the goal is to continuously generate new knowledge about FEP, the effectiveness of current interventions, and ways to improve care.

“Learning in real time is the goal,” said Robert Heinssen, Ph.D., director of the Division of Services and Intervention Research at NIMH, in an interview. “COVID slowed things down, but we now have the Core Assessment Battery that is used by all participating clinics. Now, the data coming in can be harmonized across settings and fed back to participating programs so that in close to real time a program is able to see how its performance stacks up against national metrics.”

The Core Assessment Battery collects information on symptoms, medication use, functioning, school participation, crisis service use, hospitalization, and other factors important to the treatment and outcome of patients with FEP.

Susan Azrin, Ph.D., chief of the early psychosis prediction and prevention unit at NIMH, said the battery is posted on the EPINET website for clinicians who want to incorporate measurement-based care into their treatment of patients with FEP.

Azrin also urged clinicians treating these patients to use the EPINET website to connect their patients to a participating FEP clinic.

EPINET is modeled on the Institute of Medicine’s vision for “learning health care” as a broad aspirational goal of the U.S. health care system. “That goal is to offer the best possible care, measure the impact of treatment at the point of delivery, and use data to continuously drive quality improvement,” Heinssen continued. “When the process identifies unexpected positive results or roadblocks to improvement—those become signals to reinitiate the process of scientific inquiry. Ideally, there is a virtuous cycle of moving science to service delivery to quality improvement and back to scientific discovery.”

The eight regional EPINET hubs are OnTrackNY (23 clinics); Academic-Community EPINET at Indiana University/Purdue University, Indianapolis (six clinics); Connection Learning Health System at the University of Maryland, Baltimore (20 clinics); EPI-CAL at the University of California, Davis (12 clinics); EPI-MINN at the University of Minnesota (six clinics); EPINET-TX at the University of Texas, Austin (20 clinics); ESPRITO at the Feinstein Institute for Medical Research, Manhasset, N.Y. (12 clinics); and the Laboratory for Early Psychosis at McLean Hospital, Belmont, Mass. (six clinics).

From the beginning, each of the regional hubs was tasked with proposing research questions critical to helping people with FEP. “EPINET is a remarkable effort using quality improvement as a springboard to knowledge generation,” said Lisa Dixon, M.D., M.P.H., co-principal investigator for OnTrackNY, a regional hub that is looking at the factors related to suicide in FEP patients (Psychiatric News). “When you have eight regional hubs using the Common Assessment Battery to collect information in a very systematic manner on thousands of patients, you can ask big questions.” Dixon is also the editor of APA’s journal Psychiatric Services.

Other research questions that participating hubs are investigating include how to reduce duration of untreated psychosis, tools to address cognitive deficits to increase social engagement, and the effectiveness of Coordinated Specialty Care when delivered through telehealth.

EPINET grew out of NIMH’s 2008-2015 Recovery After Initial Schizophrenia Episode (RAISE) project, which established the effectiveness of Coordinated Specialty Care, a model of team-based care incorporating pharmacotherapy and psychosocial treatments for early psychosis.

Psychiatrists are a crucial part of coordinated specialty care. “A key part of FEP treatment is pharmacotherapy informed by an understanding of the specific needs of young people receiving antipsychotic medication,” Heinssen said. “This calls for close attention to dosing, susceptibility of patients to side effects, and the need to emphasize shared decision-making in order to engage young people in treatment. As members of these teams, psychiatrists are coordinating pharmacotherapy with other aspects of treatment and receiving information about the impact and efficacy of their interventions.”

Heinssen said the learning health care model can be transformative. “This really has the potential to change the way we go about treating people with early serious mental illness and may be a harbinger for the way health care for larger populations can be organized,” he said. ■

Information about EPINET and the Core Assessment Battery is posted here.