African Americans and participation in clinical trials: differences in beliefs and attitudes by gender

Abstract

Objectives: To explore gender differences in perceptions of 1) barriers and motivators to participation in clinical trials and perceived need of clinical trials and 2) perceptions of risks and benefits of participation in clinical trials in African American men and women.

Methods: Focus groups were conducted among African American participants by gender. A total of 67 African American participated in the focus groups. All focus groups were audio-taped and transcribed verbatim. Data analysis was performed by combining the key elements of grounded theory and content analysis with the assistance of the qualitative software ATLAS.ti 5.0.

Results: Different themes emerged for men versus women. The business and economic of research were important to male participants. The researcher-participant relationship emerged as one of the strongest themes related to potential female participation in research.

Discussion: Focus group results indicate that African American men and women present different preferences, beliefs and barriers to participation. Men expressed the desire to know information on funding issues, financial benefit and impact of the research. Women expressed the desire to be treated respectfully and as an individual as opposed to just a study subject. Integrating gender preferences into researcher-participant interactions, advertisement, informed consent delivery and advertisement of research studies may lead to increased participation rates. Discussing and presenting relevant information on clinical research funding mechanisms, and the business of clinical research with potential participants may be helpful in building trust with the researcher and the research team. Creating a process for information exchange and methods to minimize the power imbalance between the researcher and participant may also build trust and help participants feel more comfortable to participate in research.