Attitudes Among African Americans in St. Louis About Participating in Research
Overview and Purpose
In 2003, PECaD’s Disparities Elimination Advisory Committee (DEAC) recommended that researchers at Washington University School of Medicine engage in ongoing constructive dialogue with community members about the research process in order to improve the conduct, relevance and impact of research on local health outcomes. The DEAC thought it was particularly important to explore African-American attitudes about and experience with research and researchers. The project team conducted 36 interviews with community leaders, 20 interviews with minority physicians and 11 focus-group discussions, which included 70 African-American community members. Participants responded to questions about factors that promote and hinder participation in medical research.
Key findings from the interviews were that African Americans in the St. Louis area think research participation is beneficial. However, lack of trust in institutions conducting research was noted to hinder research participation. While a few participants referred to the Tuskegee Syphilis Study based in Alabama, most people shared their personal experiences in navigating local hospitals. Concerns and attitudes were equal across education levels, socioeconomic status and gender. Focus-group participants believed that medical research and participating in it was important. A primary reason reported for African Americans’ lack of research participation was pervasive mistrust of the health-care system. Negative perceptions of health-care providers and health-care infrastructure were found to persist due to historical events, perceived racism and health-care disparities. Unfavorable perceptions of health professionals extended to perceptions of clinical researchers. Other barriers to participation included fear of the unknown and adverse effects, poor information dissemination in the community, inconvenience and negative reputation of researchers/research institutions.
Factors that promoted research participation were altruism and relevance of research projects to the individual, family members or African Americans in the community. To increase participation, focus-group participants suggested researchers develop sustained relationships with the community that extend both before and after immediate research interests. They also suggested researchers share research findings with the community.
Minority physicians interviewed commented on the importance of research to clinical practice and the need to involve more African Americans in clinical trials to improve the quality of care for this patient population. They also suggested that the following could hinder participation: lack of partnership between practitioners and researchers; lack of awareness of available trials; and lack of research training among physicians. Additionally, lack of time, convenience, resources and motivators prevent many physicians from being more involved in recruitment or other aspects of research. Physicians expressed that strategies to reduce mistrust, incentives and use of understandable materials and communication could help improve research participation. Physicians indicated they would be more involved if researchers created sustained, inclusive and equitable partnerships with them. Developing a lasting and interactive presence in the community could also help increase African-American participation in medical research.
This work has led to several ongoing community engagement initiatives to share research findings and cancer health and wellness information. Such activities include education in local newspapers and events with local organizations to share research findings with local leaders and community members.
Washington University Medical Center (The Memory and Aging Project, the Herbert W. Nickens, MD, Faculty Fellowship, and the Recruitment and Enhancement Core of the Center for Clinical Studies)
Katherine Mathews, MD, MPH, MBA (Primary Investigator, Southern Illinois Health Care Foundation, formerly with St. Louis ConnectCare)
Darcell Scharff, PhD (Co-Investigator, Saint Louis University)
Monique Williams (Collaborator, Washington University)
Pamela Jackson (Collaborator, Washington University)
Dorothy Edwards (Collaborator, University of Wisconsin)
Disparities Elimination and Advisory Committee (Advisor, PECaD)
Katherine Mathews, MD, MPH, MBA