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- Title
Empowering the Participant Voice (EPV): Design and implementation of collaborative infrastructure to collect research participant experience feedback at scale.
- Authors
Kost, Rhonda G.; Cheng, Alex; Andrews, Joseph; Chatterjee, Ranee; Dozier, Ann; Ford, Daniel; Schlesinger, Natalie; Dykes, Carrie; Kelly-Pumarol, Issis; Kennedy, Nan; Lewis-Land, Cassie; Lindo, Sierra; Martinez, Liz; Musty, Michael; Roberts, Jamie; Vaughan, Roger; Wagenknecht, Lynne; Carey, Scott; Coffran, Cameron; Goodrich, James
- Abstract
The article discusses the Empowering the Participant Voice (EPV) project, which aims to collect feedback from research participants to improve clinical translational research. The project utilizes the Research Participant Perception Survey (RPPS) and the REDCap electronic data-capture platform. The infrastructure developed allows for the routine collection of participant feedback and provides access to research participant experience data on an interactive analytics dashboard. The EPV project is a collaborative effort among several institutions and continues to test initiatives to improve survey reach and optimize infrastructure and process. The text discusses the implementation of the EPV (Engagement, Performance, and Value) infrastructure, which aims to improve transparency and trust in clinical translational science. The infrastructure includes a survey tool called RPPS (Research Participant Perception Survey) and a dashboard for data analysis and visualization. Stakeholders, including institutional and community members, were involved in the design and implementation process. The dashboard allows for benchmarking, filtering, and analysis of survey data, and can be used to identify areas for improvement and best practices. The text also addresses concerns and suggestions raised by stakeholders, such as the need for diverse representation, minimizing survey burden, and ensuring confidentiality of responses. The EPV project conducted surveys and collected data from participants with the approval of Institutional Review Boards. The project aimed to implement local use cases and measure success based on survey response rates and demographics. From November 2021 to May 2023, five EPV sites sent 13,850 surveys and received 2
- Publication
Journal of Clinical & Translational Science, 2024, Vol 8, Issue 1, p1
- ISSN
2059-8661
- Publication type
Article
- DOI
10.1017/cts.2024.19