Background Although research participation is essential for clinical investigation few quantitative end result actions exist to assess participants’ experiences. characteristics reactions to individual questions and correlations among reactions. Results Respondents broadly displayed the research human population in sex race and ethnicity. Seventy-three percent granted top ratings to their overall Rabbit Polyclonal to Retinoblastoma. study encounter and 94% reported no pressure to enroll. Top ratings correlated with feeling treated with respect listened to and having access to the research team (R2=0.80 – 0.96). White colored participants trusted experts (88%) than did nonwhite participants collectively (80%) (p<0.0001). Many participants felt fully prepared by the educated consent process (67%) and wanted to receive study results (72%). Conclusions Our survey demonstrates that a majority of participants at NIH-supported medical study centers rate their study experience very positively and that participant-centered outcome actions identify actionable items for improvement of participant’s experiences study protections and the conduct of clinical investigation. Introduction Human subjects’ participation in research studies PF-5274857 is vital to improving medical technology. Optimizing participant’s experiences while simultaneously ensuring that studies are carried out securely and ethically are critically important to successful conduct of clinical study. Modern patient-centered approaches to selecting outcome measures PF-5274857 look less to patient ‘satisfaction PF-5274857 ’ which is a relative concept dependent on the individual’s create and perspective 1 and instead favor asking individuals for his or her perceptions of what actually occurred collecting actionable data enabling the care team to design specific interventions. Decades of empiric study investigating individuals’ experiences in hospital settings using standardized validated studies that measure individuals’ perceptions of their clinical care possess led to overall performance improvement programs that have had a major impact on improving clinical care.2 As a result such studies have been incorporated into hospital accreditation and hospital reimbursement programs.3 In contrast although intense interest has been expressed about whether clinical research studies are conducted according to high bioethical requirements and what motivates study participants to volunteer 4 we are unaware of any validated studies that obtain empiric participant-centered outcomes to judge the effectiveness of current methods or to help to make improvements based on participants’ experiences and perspectives For example using the patient-centered orientation explained above rather than asking how happy a participant was with the consent process one can ask whether they understood the consent discussions and whether the participant’s experiences during the study matched her or his objectives developed during the recruitment and consent process.9 To address the deficiencies in measures used and approach to assessing the research participant experience we first rigorously developed a standardized Study Participant Perception Survey (RPPS) based on themes from focus groups of research participants and research professionals.10 We then deployed the survey to research participants at 15 NIH-supported clinical research centers in the United States and validated the tool based on returned responses.9 The goal of the current study was to obtain outcome data from your survey that can be used to inform the public about participation in research studies enhance participants’ experiences and protections and PF-5274857 improve the carry out of clinical research through continuous performance improvement. We recently reported a brief summary of select aspects of our study; 11 the present publication reports the comprehensive and detailed description of the research. Methods Participating Organizations The following organizations participated in the fielding of the survey: Baystate Medical Center Boston University or college Clinical Center in the National Institutes of Health Duke University or college Feinstein Institute for Medical Study Johns Hopkins University or college Oregon Health & Science University or college Stanford University or college The Rockefeller University or college The University or college of Rochester Tufts New England Medical Center University or college Private hospitals of Cleveland Case European Reserve University University or college of Texas Southwestern Medical Center Vanderbilt University or college and Yale University or college. The Questionnaire The RPPS design questions and response scales have been reported previously 9 and are aligned with the structure and standards used in The Hospital Consumer.