Kost Rhonda G, Andrews Joseph, Chatterjee Ranee, Cheng Alex C, Connally Lisa, Dozier Ann, Dykes Carrie, Ford Daniel, Green Nancy S, Jiang Caroline, Khoury-Shakour Sana, Lindo Sierra, Marder Karen, Martinez Liz, Qureshi Adam, Roberts Jamie, Schlesinger Natalie
The Rockefeller University Center for Clinical and Translational Science, New York, NY, USA.
Clinical and Translational Science Institute, Wake Forest School of Medicine, Winston-Salem, NC, USA.
J Clin Transl Sci. 2025 Jan 10;9(1):e43. doi: 10.1017/cts.2025.3. eCollection 2025.
Research participants" feedback about their participation experiences offers critical insights for improving programs. A shared Empowering the Participant Voice (EPV) infrastructure enabled a multiorganization collaborative to collect, analyze, and act on participants' feedback using validated participant-centered measures.
A consortium of academic research organizations with Clinical and Translational Science Awards (CTSA) programs administered the Research Participant Perception Survey (RPPS) to active or recent research participants. Local response data also aggregated into a Consortium database, facilitating analysis of feedback overall and for subgroups.
From February 2022 to June 2024, participating organizations sent surveys to 28,096 participants and received 5045 responses (18%). Respondents were 60% female, 80% White, 13% Black, 2% Asian, and 6% Latino/x. Most respondents (85-95%) felt respected and listened to by study staff; 68% gave their overall experience the top rating. Only 60% felt fully prepared by the consent process. Consent, feeling valued, language assistance, age, study demands, and other factors were significantly associated with overall experience ratings. 63% of participants said that receiving a summary of the study results would be very important to joining a future study. Intersite scores differed significantly for some measures; initiatives piloted in response to local findings raised experience scores.
RPPS results from 5045 participants from seven CTSAs provide a valuable evidence base for evaluating participants' research experiences and using participant feedback to improve research programs. Analyses revealed opportunities for improving research practices. Sites piloting local change initiatives based on RPPS findings demonstrated measurable positive impact.
研究参与者对其参与经历的反馈为改进项目提供了关键见解。一个共享的“增强参与者声音”（EPV）基础设施使一个多组织合作团队能够使用经过验证的以参与者为中心的措施来收集、分析参与者的反馈并据此采取行动。
一个由拥有临床和转化科学奖（CTSA）项目的学术研究组织组成的联盟，对现有的或近期的研究参与者进行了研究参与者感知调查（RPPS）。当地的回应数据也汇总到一个联盟数据库中，便于对总体反馈和子群体反馈进行分析。
从2022年2月到2024年6月，参与组织向28,096名参与者发送了调查问卷，收到5045份回复（18%）。受访者中60%为女性，80%为白人，13%为黑人，2%为亚洲人，6%为拉丁裔。大多数受访者（85 - 95%）觉得研究人员尊重他们并倾听他们的意见；68%对他们的总体体验给予了最高评价。只有60%的人觉得同意过程让他们做好了充分准备。同意、感到被重视、语言协助、年龄、研究要求和其他因素与总体体验评分显著相关。63%的参与者表示，收到研究结果总结对他们未来参与研究非常重要。一些指标的站点间得分存在显著差异；针对当地调查结果开展的试点举措提高了体验得分。
来自七个CTSA的5045名参与者的RPPS结果为评估参与者的研究经历以及利用参与者反馈改进研究项目提供了宝贵的证据基础。分析揭示了改进研究实践的机会。根据RPPS结果试点当地变革举措的站点显示出了可衡量的积极影响。
