Standards and infrastructure for multisite deployment of the research participant perception survey

Alex C. Cheng; Eva Bascompte Moragas; Ellis Thomas; Lindsay O’Neal; Paul A. Harris; Ranee Chatterjee; James Goodrich; Jamie Roberts; Sameer Cheema; Sierra Lindo; Daniel E. Ford; Liz Martinez; Scott Carey; Ann Dozier; Carrie Dykes; Pavithra Panjala; Lynne Wagenknecht; Joseph E. Andrews; Janet Shuping; Derick Burgin; Nancy S. Green; Siddiq Mohammed; Sana Khoury-Shakour; Lisa Connally; Cameron Coffran; Adam Qureshi; Natalie Schlesinger; Rhonda G. Kost

doi:10.1093/jamiaopen/ooaf017

Standards and infrastructure for multisite deployment of the research participant perception survey

Alex C. Cheng
, Eva Bascompte Moragas
, Ellis Thomas
, Lindsay O’Neal
, Paul A. Harris
, Ranee Chatterjee
, James Goodrich
, Jamie Roberts
, Sameer Cheema
, Sierra Lindo
, Daniel E. Ford
, Liz Martinez
, Scott Carey
, Ann Dozier
, Carrie Dykes
, Pavithra Panjala
, Lynne Wagenknecht
, Joseph E. Andrews
, Janet Shuping
, Derick Burgin

Nancy S. Green, Siddiq Mohammed, Sana Khoury-Shakour, Lisa Connally, Cameron Coffran, Adam Qureshi, Natalie Schlesinger, Rhonda G. Kost

School of Medicine

Research output: Contribution to journal › Article › peer-review

Abstract

Objectives: To develop and disseminate a technical framework for administering the Research Participant Perception Survey (RPPS) and aggregating data across institutions using REDCap. Materials and Methods: Six RPPS Steering Committee (RSC) member institutions met bi-weekly to achieve consensus on survey sampling techniques, data standards, participant and study descriptor variables, and dashboard design. Results: RSC members implemented the infrastructure to send the RPPS to participants and shared data to the Empowering the Participant Voice Consortium Database. Two pilot sites used the tools generated by the RSC to implement the RPPS. Discussion: The RSC created a REDCap project setup file, an external module visual analytics dashboard, an English/Spanish language file, and an implementation guide. Conclusion: The technical setup materials created by the RSC were effective in aiding new sites in implementing the RPPS and could help future sites adopt the RPPS to better understand participant experiences to improve research recruitment and retention.

Original language	English (US)
Article number	ooaf017
Journal	JAMIA Open
Volume	8
Issue number	2
DOIs	https://doi.org/10.1093/jamiaopen/ooaf017
State	Published - Apr 1 2025

Keywords

clinical research
research experience
research participant recruitment
surveys

ASJC Scopus subject areas

Health Informatics

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10.1093/jamiaopen/ooaf017

Cite this

Cheng, A. C., Bascompte Moragas, E., Thomas, E., O’Neal, L., Harris, P. A., Chatterjee, R., Goodrich, J., Roberts, J., Cheema, S., Lindo, S., Ford, D. E., Martinez, L., Carey, S., Dozier, A., Dykes, C., Panjala, P., Wagenknecht, L., Andrews, J. E., Shuping, J., ... Kost, R. G. (2025). Standards and infrastructure for multisite deployment of the research participant perception survey. JAMIA Open, 8(2), Article ooaf017. https://doi.org/10.1093/jamiaopen/ooaf017

Cheng, AC, Bascompte Moragas, E, Thomas, E, O’Neal, L, Harris, PA, Chatterjee, R, Goodrich, J, Roberts, J, Cheema, S, Lindo, S, Ford, DE, Martinez, L, Carey, S, Dozier, A, Dykes, C, Panjala, P, Wagenknecht, L, Andrews, JE, Shuping, J, Burgin, D, Green, NS, Mohammed, S, Khoury-Shakour, S, Connally, L, Coffran, C, Qureshi, A, Schlesinger, N & Kost, RG 2025, 'Standards and infrastructure for multisite deployment of the research participant perception survey', JAMIA Open, vol. 8, no. 2, ooaf017. https://doi.org/10.1093/jamiaopen/ooaf017

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title = "Standards and infrastructure for multisite deployment of the research participant perception survey",

abstract = "Objectives: To develop and disseminate a technical framework for administering the Research Participant Perception Survey (RPPS) and aggregating data across institutions using REDCap. Materials and Methods: Six RPPS Steering Committee (RSC) member institutions met bi-weekly to achieve consensus on survey sampling techniques, data standards, participant and study descriptor variables, and dashboard design. Results: RSC members implemented the infrastructure to send the RPPS to participants and shared data to the Empowering the Participant Voice Consortium Database. Two pilot sites used the tools generated by the RSC to implement the RPPS. Discussion: The RSC created a REDCap project setup file, an external module visual analytics dashboard, an English/Spanish language file, and an implementation guide. Conclusion: The technical setup materials created by the RSC were effective in aiding new sites in implementing the RPPS and could help future sites adopt the RPPS to better understand participant experiences to improve research recruitment and retention.",

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author = "Cheng, \{Alex C.\} and \{Bascompte Moragas\}, Eva and Ellis Thomas and Lindsay O{\textquoteright}Neal and Harris, \{Paul A.\} and Ranee Chatterjee and James Goodrich and Jamie Roberts and Sameer Cheema and Sierra Lindo and Ford, \{Daniel E.\} and Liz Martinez and Scott Carey and Ann Dozier and Carrie Dykes and Pavithra Panjala and Lynne Wagenknecht and Andrews, \{Joseph E.\} and Janet Shuping and Derick Burgin and Green, \{Nancy S.\} and Siddiq Mohammed and Sana Khoury-Shakour and Lisa Connally and Cameron Coffran and Adam Qureshi and Natalie Schlesinger and Kost, \{Rhonda G.\}",

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doi = "10.1093/jamiaopen/ooaf017",

language = "English (US)",

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AU - O’Neal, Lindsay

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AU - Chatterjee, Ranee

AU - Goodrich, James

AU - Roberts, Jamie

AU - Cheema, Sameer

AU - Lindo, Sierra

AU - Ford, Daniel E.

AU - Martinez, Liz

AU - Carey, Scott

AU - Dozier, Ann

AU - Dykes, Carrie

AU - Panjala, Pavithra

AU - Wagenknecht, Lynne

AU - Andrews, Joseph E.

AU - Shuping, Janet

AU - Burgin, Derick

AU - Green, Nancy S.

AU - Mohammed, Siddiq

AU - Khoury-Shakour, Sana

AU - Connally, Lisa

AU - Coffran, Cameron

AU - Qureshi, Adam

AU - Schlesinger, Natalie

AU - Kost, Rhonda G.

PY - 2025/4/1

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N2 - Objectives: To develop and disseminate a technical framework for administering the Research Participant Perception Survey (RPPS) and aggregating data across institutions using REDCap. Materials and Methods: Six RPPS Steering Committee (RSC) member institutions met bi-weekly to achieve consensus on survey sampling techniques, data standards, participant and study descriptor variables, and dashboard design. Results: RSC members implemented the infrastructure to send the RPPS to participants and shared data to the Empowering the Participant Voice Consortium Database. Two pilot sites used the tools generated by the RSC to implement the RPPS. Discussion: The RSC created a REDCap project setup file, an external module visual analytics dashboard, an English/Spanish language file, and an implementation guide. Conclusion: The technical setup materials created by the RSC were effective in aiding new sites in implementing the RPPS and could help future sites adopt the RPPS to better understand participant experiences to improve research recruitment and retention.

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Standards and infrastructure for multisite deployment of the research participant perception survey

Abstract

Keywords

ASJC Scopus subject areas

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