Toward Health Equity: A National Study of Promising Practices in Community-Based Participatory Research

The significance of stakeholder knowledge and participation in research addressing complex health problems has grown exponentially¹ and is reflected in national initiatives (i.e., Patient Centered Outcomes Research Institute,² the Centers for Disease Control and Prevention (CDC)’ s Prevention Research Centers,^3,4 Agency for Healthcare Research and Quality’s Practice-Based Research Networks,⁵ Clinical Translational Science Awards,^6,7 and the National Institutes of Health (NIH) CBPR Program Announcements.^8–11 Additionally, the Affordable Care Act’s focus on eliminating disparities relies on community engagement and CEnR to align academic health centers with community priorities and to build multidirectional capacity, especially among historically underserved populations.¹²

Because power rarely concedes without a demand,¹³ the move toward wider use of CBPR and CEnR approaches is equally motivated by both protests from, and lack of research participation by, groups historically ignored or subject to unethical and biased research questions and methods.^9,14,15 CBPR efforts with groups who have been historically marginalized by scientific knowledge production are commonly aimed at preventing ongoing abuses, prioritizing community-defined research questions, ensuring community-level benefit, and integrating community-derived theories of etiology and change.^16,17 Furthermore, CBPR can work to decolonize research through embracing knowledge democracy by the use of “southern epistemologies” (articulated by Boaventura de Sousa Santos, University of Coimbra in Portugal, to refer to non-Western and indigenous knowledge systems, including those that are not technically in the “global south”) benefiting health status and wellness of all.^18,19

Despite the rapid growth of CBPR/CEnR, a shared measurement and evaluation science is just now being established. Many high-functioning research partnerships have solid evaluation designs,^20,21 and there is a small but growing number of instruments and theories of change, that is, measuring CBPR principles and community participation in research, as well as the importance of trust and synergy.^22,23 Recent systematic reviews have also shown the effectiveness of CBPR/CEnR in achieving a range of capacity, social support, and health behavior and health outcomes across populations.²² A recent survey of CBPR/CEnR measures across 62 academic health centers with Clinical Translational Science Awards based on an infrastructure logic model,²⁴ however, showed little consensus on partnering assessment tools, on research designs, or on the contributions of effective partnering practices with outcomes.²⁵

The NIH-funded study reported here...