Can Lay Community Advisors Improve the Clarity of Research Participant Recruitment Materials and Increase the Likelihood of Participation?

Abstract

Despite decades of effort, lower income people and ethnic minorities continue to be underrepresented as participants in health research. A group of racially and ethnically diverse, lower income community members (Community Advisors on Research Design and Strategies: CARDS®) was trained to review study designs and procedures and provide recommendations to researchers for increasing participation and making research materials more understandable to members of underrepresented communities. In this mixed methods study, one participant group (n = 55) was shown research materials (recruitment documents and a consent form) developed by a research team and approved by the local IRB. A second group (n = 45) was shown the same materials after they had also been reviewed and revised by CARDS. Interviews, which included both fixed-response and open-ended questions, were used to assess reactions of participants in both groups to the materials, including their hypothetical willingness to volunteer for the research described. Group differences were examined using the Chi-square distribution test. Proportional difference effect sizes were estimated using arcsine transformation. The qualitative data were subjected to conventional content analysis. Participants in the group shown the recruitment materials revised by CARDS were more likely to say they understood the documents, more likely to ask for more information about the study, and more likely to say they would participate in the research. Results of content analysis suggested a four-phase sequential process for deciding whether to participate in the research. © 2016 Wiley Periodicals, Inc.