177 Placing Participant Experiences at the Center of Improving Research by Empowering the Participant Voice

IF 2.1 Q3 MEDICINE, RESEARCH & EXPERIMENTAL Journal of Clinical and Translational Science Pub Date : 2024-04-03 DOI:10.1017/cts.2024.168
Rhonda Kost, Ranee Chatterjee, Ann Dozier, Daniel Ford, Joseph Andrews, Nancy Green, Paul A. Harris, Alex Cheng
{"title":"177 Placing Participant Experiences at the Center of Improving Research by Empowering the Participant Voice","authors":"Rhonda Kost, Ranee Chatterjee, Ann Dozier, Daniel Ford, Joseph Andrews, Nancy Green, Paul A. Harris, Alex Cheng","doi":"10.1017/cts.2024.168","DOIUrl":null,"url":null,"abstract":"OBJECTIVES/GOALS: Empowering the Participant Voice (EPV) is a 6-CTSA Rockefeller-led collaboration to developcustom REDCap infrastructure to collect participant feedback using the validated Research Participant Perception Survey (RPPS), demonstrate its value in use cases, and disseminate it for broad adoption. METHODS/STUDY POPULATION: The EPV team developed data and survey implementation standards, and specifications for the dashboard and multi-lingual RPPS/REDCap project XML file. The VUMC built a custom At-a-Glance Dashboard external module that displays Top Box scores (percent best answer), with conditional formatting to aid analysis, and response/completion rates. Results populate site dashboards, and aggregate to a multi-site dashboard for benchmarking. Results can be filtered by participant/study characteristics. Sites developed individual use cases, leveraging local infrastructure, initiatives and stakeholder input. Infrastructure and guides were designed for dissemination through public websites. RESULTS/ANTICIPATED RESULTS: Five sites sent 23,797surveys via email, patient portal or SMS. 4,133 (19%) participants diverse in age, race, and ethnicity, returned responses. Sites analyzed their data and acted on selected findings, improving recruitment, communication and feeling valued. Aggregate scores for feeling listened to and respected were hight (>90%%); scores for feeling prepared by the consent process were lower (57-77%) and require action. Some groups experiences were better than others. Sites differed significantly in some scores. Dissemination of EPV is underway. Infrastructure and guides are downloadable free of charge, with advice from the EPV team. In 2023, a sixth site began piloting a lower literacy survey version and syncing data to the consortium dashboard. DISCUSSION/SIGNIFICANCE: The EPV RPPS/REDCap infrastructure enabled sites to collect participant feedback, identify actionable findings and benchmark with peers. Stakeholders and collaborators designed and tested local initiatives to increase responses and diversity, address disparities, and discover better practices.","PeriodicalId":15529,"journal":{"name":"Journal of Clinical and Translational Science","volume":null,"pages":null},"PeriodicalIF":2.1000,"publicationDate":"2024-04-03","publicationTypes":"Journal Article","fieldsOfStudy":null,"isOpenAccess":false,"openAccessPdf":"","citationCount":"0","resultStr":null,"platform":"Semanticscholar","paperid":null,"PeriodicalName":"Journal of Clinical and Translational Science","FirstCategoryId":"1085","ListUrlMain":"https://doi.org/10.1017/cts.2024.168","RegionNum":0,"RegionCategory":null,"ArticlePicture":[],"TitleCN":null,"AbstractTextCN":null,"PMCID":null,"EPubDate":"","PubModel":"","JCR":"Q3","JCRName":"MEDICINE, RESEARCH & EXPERIMENTAL","Score":null,"Total":0}
引用次数: 0

Abstract

OBJECTIVES/GOALS: Empowering the Participant Voice (EPV) is a 6-CTSA Rockefeller-led collaboration to developcustom REDCap infrastructure to collect participant feedback using the validated Research Participant Perception Survey (RPPS), demonstrate its value in use cases, and disseminate it for broad adoption. METHODS/STUDY POPULATION: The EPV team developed data and survey implementation standards, and specifications for the dashboard and multi-lingual RPPS/REDCap project XML file. The VUMC built a custom At-a-Glance Dashboard external module that displays Top Box scores (percent best answer), with conditional formatting to aid analysis, and response/completion rates. Results populate site dashboards, and aggregate to a multi-site dashboard for benchmarking. Results can be filtered by participant/study characteristics. Sites developed individual use cases, leveraging local infrastructure, initiatives and stakeholder input. Infrastructure and guides were designed for dissemination through public websites. RESULTS/ANTICIPATED RESULTS: Five sites sent 23,797surveys via email, patient portal or SMS. 4,133 (19%) participants diverse in age, race, and ethnicity, returned responses. Sites analyzed their data and acted on selected findings, improving recruitment, communication and feeling valued. Aggregate scores for feeling listened to and respected were hight (>90%%); scores for feeling prepared by the consent process were lower (57-77%) and require action. Some groups experiences were better than others. Sites differed significantly in some scores. Dissemination of EPV is underway. Infrastructure and guides are downloadable free of charge, with advice from the EPV team. In 2023, a sixth site began piloting a lower literacy survey version and syncing data to the consortium dashboard. DISCUSSION/SIGNIFICANCE: The EPV RPPS/REDCap infrastructure enabled sites to collect participant feedback, identify actionable findings and benchmark with peers. Stakeholders and collaborators designed and tested local initiatives to increase responses and diversity, address disparities, and discover better practices.
查看原文
分享 分享
微信好友 朋友圈 QQ好友 复制链接
本刊更多论文
177 通过赋予参与者发言权,将参与者的经历置于改进研究的中心位置
目标/目的:赋予参与者话语权(EPV)是一项由洛克菲勒领导的 6 CTSA 合作项目,旨在开发定制的 REDCap 基础设施,以便使用经过验证的研究参与者感知调查(RPPS)收集参与者的反馈意见,在使用案例中展示其价值,并将其推广开来供广泛采用。方法/研究对象:EPV 团队制定了数据和调查实施标准,以及仪表板和多语言 RPPS/REDCap 项目 XML 文件的规格。VUMC 定制了一个 "一目了然 "仪表盘外部模块,用于显示 "顶部方框 "得分(最佳答案百分比),并通过条件格式化帮助分析,以及回复率/完成率。结果将填充到医疗点仪表板中,并汇总到多医疗点仪表板中进行基准比较。结果可按参与者/研究特征进行筛选。各站点利用当地的基础设施、倡议和利益相关者的意见,开发了各自的使用案例。设计了基础设施和指南,以便通过公共网站进行传播。结果/预期结果:五个站点通过电子邮件、患者门户网站或短信发送了 23797 份调查问卷。4133名(19%)不同年龄、种族和民族的参与者返回了回复。各医疗点对数据进行了分析,并根据所选结果采取了行动,改善了招募、沟通和受重视感。感觉被倾听和尊重的总得分很高(90%);感觉同意程序准备充分的得分较低(57-77%),需要采取行动。有些小组的体验比其他小组好。各地区在某些评分方面差异很大。目前正在传播 EPV。在 EPV 团队的建议下,可免费下载基础设施和指南。2023 年,第六个站点开始试用低识字率调查版本,并将数据同步到联盟仪表板。讨论/意义:EPV RPPS/REDCap 基础设施使各站点能够收集参与者的反馈意见,确定可操作的调查结果,并与同行进行比较。利益相关者和合作者设计并测试了地方倡议,以提高响应度和多样性、解决差异问题并发现更好的做法。
本文章由计算机程序翻译,如有差异,请以英文原文为准。
求助全文
约1分钟内获得全文 去求助
来源期刊
Journal of Clinical and Translational Science
Journal of Clinical and Translational Science MEDICINE, RESEARCH & EXPERIMENTAL-
CiteScore
2.80
自引率
26.90%
发文量
437
审稿时长
18 weeks
期刊最新文献
Overview of ACTIV trial-specific lessons learned. Preparing better: Accelerating COVID-19 Therapeutic Interventions and Vaccines (ACTIV) therapeutics trials lessons learned: A call to the future. The future is now: Using the lessons learned from the ACTIV COVID-19 therapeutics trials to create an inclusive and efficient clinical trials enterprise. ACTIV trials: Lessons learned in trial design in the setting of an emergent pandemic. Realizing the potential of social determinants data in EHR systems: A scoping review of approaches for screening, linkage, extraction, analysis, and interventions.
×
引用
GB/T 7714-2015
复制
MLA
复制
APA
复制
导出至
BibTeX EndNote RefMan NoteFirst NoteExpress
×
×
提示
您的信息不完整,为了账户安全,请先补充。
现在去补充
×
提示
您因"违规操作"
具体请查看互助需知
我知道了
×
提示
现在去查看 取消
×
提示
确定
0
微信
客服QQ
Book学术公众号 扫码关注我们
反馈
×
意见反馈
请填写您的意见或建议
请填写您的手机或邮箱
已复制链接
已复制链接
快去分享给好友吧!
我知道了
×
扫码分享
扫码分享
Book学术官方微信
Book学术文献互助
Book学术文献互助群
群 号:481959085
Book学术
文献互助 智能选刊 最新文献 互助须知 联系我们:info@booksci.cn
Book学术提供免费学术资源搜索服务,方便国内外学者检索中英文文献。致力于提供最便捷和优质的服务体验。
Copyright © 2023 Book学术 All rights reserved.
ghs 京公网安备 11010802042870号 京ICP备2023020795号-1