Research Participant‐Centered Outcomes at NIH‐Supported Clinical Research Centers

• DOI: 10.1111/cts.12167
• Publication Date: 2014-05-19T10:50:09Z
• Authors: Rhonda G. Kost; Laura N. Lee; Jennifer L. Yessis; Robert Wesley; Sandra Alfano; Steven R. Alexander; Sylvia Baedorf Ka...; Philip Cola; Ann Dozier; Dan E. Ford; Paul A. Harris; Emmelyn Kim; Simon Craddock Lee; Gerri O'Riordan; Mary‐Tara Roth; Kathryn Schuff; June Wasser; David K. Henderson; Barry S. Coller
• Keywords: Clinical Research; Research Design

Abstract Background Although research participation is essential for clinical investigation, few quantitative outcome measures exist to assess participants’ experiences. To address this, we developed and deployed a survey at 15 NIH‐supported centers participant‐centered outcomes; report responses from 4,961 participants. Methods Survey questions addressed core aspects of the experience, including their overall rating, motivation, trust, informed consent. We describe participant characteristics, individual questions, correlations among responses. Results Respondents broadly represented population in sex, race, ethnicity. Seventy‐three percent awarded top ratings experience 94% reported no pressure enroll. Top correlated with feeling treated respect, listened to, having access team ( R 2 = 0.80–0.96). White participants trusted researchers more (88%) than did nonwhite collectively (80%; p < 0.0001). Many felt fully prepared by consent process (67%) wanted receive results (72%). Conclusions Our demonstrates that majority rate very positively identify actionable items improvement participant's experiences, protections, conduct investigation.