Gatekeepers, gateways, or guides: Analyzing the nature & impact of community governance in partnered health research projects

In this paper, a team of scholars presents analysis focused on exploring the nature of governance and how it impacts outcomes in a range of community-partnered research initiatives, with a goal of developing insights about how governance matters in community-based participatory research (CBPR). Here, governance can include research regulation, research oversight, and responsibility for meaningful research outcomes. This analysis comes out of the NIH-funded Native American Research Centers for Health multi-year (2009-2013), multi-site study, “Research for Improved Health,” on CBPR in partnered projects designed to reduce health disparities. Specifically, we will present mixed-methods analysis developed from a survey of 200 projects employing CBPR approaches identified through a pool of 294 CBPR projects from a search of the RePORTER database in 2009, as well as case studies with seven community-partnered health research initiatives in diverse places and demographic contexts (e.g., urban and rural, tribal and non-tribal, and racially/ethnically diverse). Topics analyzed and discussed include: the relationship between legitimacy and authority in different contexts, distinct perspectives on the role of community research regulation bodies as gatekeepers/gateways/guides, the economics of research oversight and governance, and the link between research governance structures and decision-making processes. The outcome is to provide substance to existing discourses about the impact of community-based research regulation on research outcomes.