About CPPRN

CPPRN was funded by the Patient-Centered Outcomes Research Institute (PCORI), an independent nonprofit, nongovernmental organization which was authorized by Congress in 2010. PCORI funds research that addresses the questions and concerns most relevant to patients, by involving patients, caregivers, clinicians, and other healthcare stakeholders, along with researchers, throughout the process.  

PCORI created an innovative initiative in 2013 called the National Patient-Centered Clinical Research Network (PCORnet). This initiative was created to enable providers to obtain pressing clinical questions more quickly and efficiently. PCORnet seeks to simultaneously integrate health data for studies and catalyze research partnerships among two types of networks. The CPPRN is a Patient-Powered Research Network (PPRN), which is operated and governed by patient groups and their partners.

The Los Angeles County and New Orleans Centers of Excellence and their partners worked with 5 LAC and 2 NO neighborhoods where they have previously established trust through a decade of collaboration.

GOALS OF CPPRN 

The goal of CPPRN 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. CPPRN aims to accomplish this goal by:

  1. Developing policies with stakeholders via the CPPR approach and community relationships developed through longstanding community relationships.
  2. Create a reproducible approach to participatory research infrastructure development involving patients, caregivers, clinicians, and community stakeholders.
  3. Develop research and data infrastructure using a partnered working group process with collaborative decision making.

PRINCIPLES OF CPPRN 

  • Trust
  • Respect
  • Transparency
  • Strength-based
  • Power and knowledge sharing
  • Co-leadership by community members, patients, and researchers
  • Building skills and knowledge among all participants
  • Co-ownership of all products including data
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