Power to Listen and Facilitate Change
By Dr. Rosalind Ramsey-Goldman, MD
Dr. Rosalind Ramsey-Goldman is a physician and educator in Chicago.
A physician and educator, I recently had the privilege of being the listener during discussions with Black/African American community leaders learning about participating in clinical trials.
I am a participant in a community-academic partnership (CAP) where we work with community leaders to understand decision-making regarding participation in clinical trials by Black/African Americans with systemic lupus erythematosus (SLE).
Trials test innovative treatment strategies, including drugs, devices and behavioral strategies, to improve disease outcomes while monitoring safety. There are significant disparities in participation in the United States.
This is where CAPs come in.
These initiatives have evolved as an effective way to enhance the design and dissemination of health care interventions. Community leaders work with a playbook that allows them to describe key components of trials and encourages sharing personal experiences that inform healthcare decisions.
One dynamic discussion led by Dr. Rodlescia Sneed at Michigan State University tackled racism in clinical trial participation. “I live in a city that is 94% white,” Sneed said. “I never even go for a walk without ID because I know at some point I’ll be asked to ‘prove’ that I live here.”
Community leaders later shared reasons why people might be hesitant about trials:
LaShon Gurrola said, the “Black community may feel…this new treatment is not for us because we were not involved in its development.”
Kayrene Mimms said growing up Black in the Jim Crow South “caused me to experience many examples of health and racial disparities in healthcare.” For instance, “Dr. Mac,” the only white doctor in town, required Black patients “to enter the side door, not the front door.”
These heartfelt examples underscore why health care providers must be aware of how personal experiences, especially those involving disparate treatment, affect patient healthcare decisions.
Dr. Rosalind Ramsey-Goldman, MD, DrPH, Dis a professor of medicine in rheumatology.
““Health care providers must be aware of how personal experiences, especially those involving disparate treatment, affect patient healthcare decisions. Community leaders work with a playbook that encourages sharing personal experiences.” —Dr. Rosalind Ramsey-Goldman #PowerToChangeStories ”