Applying a community-based participatory research framework to patient and family engagement in the development of patient-centered outcomes research and practice

There has been increasing recognition of the need to engage patients, families, and other patient stakeholders in research. This article seeks to provide understanding and examples of how to apply core principles of community-based participatory research (CBPR) in developing patient-centered outcomes research (PCOR) that can impact clinical and public health practice. Authors review CBPR principles and demonstrate how to translate them into effective PCOR strategies. Common themes of CBPR principles and PCOR strategies are related to: (a) fostering joint ownership in the identification of health priorities, the development and evaluation of research strategies and their design, and the dissemination of findings; (b) a keen recognition and appreciation for the importance of stakeholder-driven priorities, research, and solutions; (c) building capacity of both stakeholders and researchers to engage in research collaboratively; and (d) recognizing that conducting the research is not the endpoint but continues on with a commitment to dissemination, spread, adoption and sustainability. The authors highlight the specific strategies in which these CBPR principles can be translated for use in engaging patients and families, and including other stakeholders such as care providers, community partner organizations, health systems, and insurers, in the research process to ensure the development of PCOR.