Open AccessResearch Participant‐Centered Outcomes at NIH‐Supported Clinical Research Centers
Author(s) -
Kost Rhonda G.,
Lee Laura N.,
Yessis Jennifer L.,
Wesley Robert,
Alfano Sandra,
Alexander Steven R.,
Kassis Sylvia Baedorf,
Cola Philip,
Dozier Ann,
Ford Dan E.,
Harris Paul A.,
Kim Emmelyn,
Lee Simon Craddock,
O'Riordan Gerri,
Roth MaryTara,
Schuff Kathryn,
Wasser June,
Henderson David K.,
Coller Barry S.
Publication year - 2014
Publication title -
clinical and translational science
Language(s) - English
Resource type - Journals
SCImago Journal Rank - 1.303
H-Index - 44
eISSN - 1752-8062
pISSN - 1752-8054
DOI - 10.1111/cts.12167
Subject(s) - informed consent , clinical research , feeling , ethnic group , psychology , population , family medicine , medicine , institutional review board , research design , clinical psychology , alternative medicine , social psychology , psychiatry , social science , environmental health , pathology , sociology , anthropology
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 clinical research centers to assess participant‐centered outcomes; we report responses from 4,961 participants. Methods Survey questions addressed core aspects of the research participants’ experience, including their overall rating, motivation, trust, and informed consent. We describe participant characteristics, responses to individual questions, and correlations among responses. Results Respondents broadly represented the research population in sex, race, and ethnicity. Seventy‐three percent awarded top ratings to their overall research experience and 94% reported no pressure to enroll. Top ratings correlated with feeling treated with respect, listened to, and having access to the research team ( R 2 = 0.80–0.96). White participants trusted researchers more (88%) than did nonwhite participants collectively (80%; p < 0.0001). Many participants felt fully prepared by the informed consent process (67%) and wanted to receive research results (72%). Conclusions Our survey demonstrates that a majority of participants at NIH‐supported clinical research centers rate their research experience very positively and that participant‐centered outcome measures identify actionable items for improvement of participant's experiences, research protections, and the conduct of clinical investigation.