Research participant-centered outcomes at NIH-supported clinical research centers.
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.
Center for Clinical Translational Science, The Rockefeller University, New York, New York, USA.
Rhonda G
RG
Kost
Laura N
LN
Lee
Jennifer L
JL
Yessis
Robert
R
Wesley
Sandra
S
Alfano
Steven R
SR
Alexander
Sylvia Baedorf
SB
Kassis
Philip
P
Cola
Ann
A
Dozier
Dan E
DE
Ford
Paul A
PA
Harris
Emmelyn
E
Kim
Simon Craddock
SC
Lee
Gerri
G
O'Riordan
Mary-Tara
MT
Roth
Kathryn
K
Schuff
June
J
Wasser
David K
DK
Henderson
Barry S
BS
Coller
D035843:Biomedical Research; D003710:Demography; D005260:Female; D006801:Humans; D007258:Informed Consent; D008297:Male; D009042:Motivation; D009316:National Institutes of Health (U.S.); D063868:Patient Outcome Assessment; D012044:Regression Analysis; D012108:Research Personnel; D011795:Surveys and Questionnaires; D014481:United States
clinical trials; outcomes research; patient satisfaction; patient-centered outcomes research; translational research