266044 Confronting barriers to African American participation in research studies

Monday, October 29, 2012

Mary E. Crump, RN, MSN, MPH, CRRN, CCM, DrPH(s) , Department of Medicine/UMMC, Jackson Heart Study, Jackson, MS
Daniel Sarpong, PhD , RTRN - Data and Technology Coordinating Center, Jackson State University, Jackson, MS
Clifton C. Addison, PhD , Jackson Heart Study/Project Health, Jackson State University, Jackson, MS
Background: Though significant strives have been made in recruiting and retaining ethnic minorities, particularly African Americans (AAs) in large scale research studies, retention still poses a major challenge. Trust seems to be major among several factors that explain why AAs and other minorities have been under-represented in virtually all aspects of clinical research. Objective: This study was designed to: 1) identify barriers and facilitators to retention in research; 2) investigate the perceptions of the obstacles to AA participation/retention in research; and 3) propose and test a theoretical framework for retention of AAs in research. Methods: Systematic literature review was employed to identify emerging themes of facilitators and barriers to retention in the Jackson Heart Study (JHS). JHS is a prospective, epidemiologic, population-based longitudinal study investigating cardiovascular disease among AAs (n=5301) in the Jackson, Mississippi Metropolitan Statistical Area that began September 2000. Mixed methods were employed to analyzed study data (Exams 1, 2000-2004 and Exam 2, 2005-2008). Results: Retention rate between Exams I and II was 85%. Lack of trust was mitigated by effective staff communication, community activities, cultural sensitivity, and taking time to explain study activities to participants in a warm and friendly atmosphere. Social Cognitive Theory was the hypothesized theoretical framework in examining retention of AAs in large scale research studies. Discussion: The retention strategies used by JHS could serve as a retention model for African American and other ethnic minorities in single- and multi-site research studies.

Learning Areas:
Public health or related research
Systems thinking models (conceptual and theoretical models), applications related to public health

Learning Objectives:
1. Discuss facilitators and barriers to retention of African Americans in research studies. 2. List strategies that could be used to mitigate barriers to retention of African Americans in research studies. 3. Discuss potential theoretical framework to understanding the facilitators and barriers to retention of African Americans in large-scale research studies.

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am qualified to be an abstract Author on the content I am responsible for because I have been working with the retention aspects and developing strategies to retain the cohort.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.