The Community and Patient Partnered Research Network (CPPRN) will be a new patient-powered research network (PPRN) in Los Angeles County (LAC) and New Orleans (NO) focusing on behavioral health services in collaboration with under-resourced communities. This proposed network is driven by equal partnerships between patients, community members, and researchers to develop a behavioral health data infrastructure for conducting research based on the priorities of communities, patients, and caregivers. We use community-partnered participatory research (CPPR) to engage patients and community stakeholders in co-leading research relevant to communities, while addressing distrust in research. Our research shows that CPPR can lead to improved outcomes such as mental health quality of life, lowered homelessness, and reduced hospitalizations.
The CPPRN’s goal is to address persistent racial/ethnic disparities (primarily involving African Americans and Latinos) among adults (18 years or older) and adolescents (13–17 years) at risk for behavioral health conditions. Community members will be identified by use of behavioral health specialty or primary care services for a behavioral health diagnosis, or if they have a social/environmental risk factor for a behavioral health diagnosis such as poverty, homelessness, or trauma exposure. This focus on stigmatizing behavioral health conditions in under-resourced communities will add unique value to PCORnet’s engagement of diverse populations in comparative effectiveness research.
The CPPRN builds on 12 years of community partnerships. In LAC, partners include the University of California, Los Angeles; Healthy African American Families II; LAC Departments of Mental Health, Public Health, Health Services; and LA Care Health Plan, a public corporation administering Medicaid. In NO, partners include Louisiana State University, the Louisiana Clinical Data Research Network of Louisiana Public Health Institute (LaCDRN), Louisiana Medicaid, LSU Healthcare Network, Interim Louisiana Hospital, Tulane University, the Louisiana Community Health Worker Training Institute, and St. Anna’s Episcopal Church.]
As Step 1, CPPR is used to screen and enroll patients from healthcare and community-based programs in five LAC and two NO neighborhoods. We will document our CPPR approach to meet PCORnet data and research infrastructure goals. Aided by our PCORnet partners (LaCDRN, pSCANNER, OHSU ADVANCE Clinical Data Research Network, Mood Disorders PPRN) and system and payer partners, we will generate de-identified data including demographic, health insurance, clinical, social services (adults only), and jail data (adults only) for 170,000–225,000 patients and pilot data with contact information on 2,000 patients across LAC and NO under-resourced neighborhoods. Following Step I, we will extend the CPPRN infrastructure to new partnerships within pilot areas and to new neighborhoods, and facilitate data access and CPPR approaches for collaborators, while developing new community co-led PCORnet studies on behavioral health issues salient to under-resourced communities.
View more about this project on PCORnet.org.