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. 2014 Dec;7(6):430-40.
doi: 10.1111/cts.12167. Epub 2014 May 19.

Research participant-centered outcomes at NIH-supported clinical research centers

Rhonda G Kost  1 , Laura N Lee, Jennifer L Yessis, Robert Wesley, Sandra Alfano, Steven R Alexander, Sylvia Baedorf Kassis, 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
Affiliations

Research participant-centered outcomes at NIH-supported clinical research centers

Rhonda G Kost et al. Clin Transl Sci. 2014 Dec.

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 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.

Keywords: clinical trials; outcomes research; patient satisfaction; patient-centered outcomes research; translational research.

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Figures

Figure 1
Figure 1
Participants’ ratings of their overall research experience (N = 4,961)
Figure 2
Figure 2
Participants’ ratings of their likelihood to recommend research participation to family or friends (N = 4,961).
Figure 3
Figure 3
Correlation between rating the overall experience with an optimal, “top‐box” score (“9” or “10”), and rating “Feeling like a valued partner in research” with a “top‐box” score (“always”), according to (A) race, (B) participant age, and (C) participant's self‐rating of his/her overall health.
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