Restoring trust in research by creating lasting relationships

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MUSC Catalyst News
Dr. Michelle Nichols (left) and Dr. Gayenell Magwood (right) of MUSC’s College of Nursing

Distrust can lead people to put up walls. For communities of color, past abuses, such as the Tuskegee Experiment, left them wary of scientific research.

That distrust has been further fueled by the on-again, off-again relationship some researchers have offered these communities. Keen at first to engage them to gain data for their studies, some researchers disappeared once funding ran out, often without even informing participants of study results.

Such relationships of convenience left these communities skeptical about researchers’ interest in their health and welfare, said Michelle Nichols, Ph.D., an assistant professor in the College of Nursing at MUSC, who directs the South Carolina Clinical & Translational Research Institute’s Community Engaged Scholars Program.

Tearing down those walls and restoring trust is the goal of community-based participatory research (CBPR). Its tools of the trade, according to Nichols, are trust, respect and willingness to put in the time and effort to repair and build relationships with community members, in part by listening to and respecting their stories.

In a recent article on CBPR in Stroke, Nichols and Gayenell Magwood, Ph.D., professor in the College of Nursing, share their decades-long experiences breaking down walls of distrust and provide examples from three stroke initiatives that successfully incorporated CBPR.

CTSA Program In Action Goals
Goal 2: Engage Patients and Communities in Every Phase of the Translational Process
Goal 3: Promote the Integration of Special and Underserved Populations in Translational Research Across the Human Lifespan