Cargando…

143 Wouldn’t you like to know what your research study participants are thinking? A collaboration for Empowering the Participant Voice

OBJECTIVES/GOALS: Empowering the Participant Voice (EPV) is a Rockefeller-led 6-CTSA consortium that aims to collect research participant feedback through new Research Participant Perception Survey (RPPS)/REDCap infrastructure and data aggregation to a national database. Here we describe diverse Use...

Descripción completa

Detalles Bibliográficos
Autores principales: Kost, Rhonda G., Andrews, Joseph, Chatterjee, Ranee, Cheng, Alex, Dozier, Ann, Ford, Daniel, Harris, Paul A.
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Cambridge University Press 2023
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10129524/
http://dx.doi.org/10.1017/cts.2023.225
_version_ 1785030761046343680
author Kost, Rhonda G.
Andrews, Joseph
Chatterjee, Ranee
Cheng, Alex
Dozier, Ann
Ford, Daniel
Harris, Paul A.
author_facet Kost, Rhonda G.
Andrews, Joseph
Chatterjee, Ranee
Cheng, Alex
Dozier, Ann
Ford, Daniel
Harris, Paul A.
author_sort Kost, Rhonda G.
collection PubMed
description OBJECTIVES/GOALS: Empowering the Participant Voice (EPV) is a Rockefeller-led 6-CTSA consortium that aims to collect research participant feedback through new Research Participant Perception Survey (RPPS)/REDCap infrastructure and data aggregation to a national database. Here we describe diverse Use Cases and launch dissemination to other hubs. METHODS/STUDY POPULATION: The EPV team refined the RPPS-S and developed fielding and data standards, a multi-lingual RPPS/REDCap project XML, At-a-Glance Dashboard, EPV Consortium Database, and Use Cases to align with local initiatives and stakeholder input. Sites ran full thread tests of the infrastructure before launch. To demonstrate RPPS/REDCap, 5 sites implemented Use Cases, surveyed diverse populations via email, patient portal or SMS, and analyzed results using the At-a-Glance Dashboard External module (which provides visual analytics and enables filtering by participant/study characteristics). Sites continue to collect, synthesize and respond to actionable data. To disseminate infrastructure, we will invite early adopters to implement the RPPS/REDCap infrastructure locally, joining the EPV learning collective. RESULTS/ANTICIPATED RESULTS: To date, 5 sites surveyed 10,199 research participants, at post-consent or end of study. 2833 (26%) research participants responded, from diverse demographic groups. More than 90% gave the Top Box score response regarding courtesy, respect for cultural background, privacy, and lack of pressure to join a study. Disparities were apparent in the informed consent experience, with a Top Box score range of 38-78% in different demographics. Dissatisfaction with out-of-pocket research costs was a recurring theme. Top Box scores varied for feeling like a valued partner in research (69-93%), would recommend research participation to friends or family (56%-81%), and Overall Experience (64%-90%) questions. Sites identified actionable findings in areas of consent, communication, partnership, and study conduct. DISCUSSION/SIGNIFICANCE: The EPV RPPS/REDCap infrastructure enabled sites to broadly collect participant feedback, identify actionable findings and make inter-institutional comparisons. Collaborators are designing local initiatives to increase response rate and diversity, address disparities in research participation experiences, and discover better practices.
format Online
Article
Text
id pubmed-10129524
institution National Center for Biotechnology Information
language English
publishDate 2023
publisher Cambridge University Press
record_format MEDLINE/PubMed
spelling pubmed-101295242023-04-26 143 Wouldn’t you like to know what your research study participants are thinking? A collaboration for Empowering the Participant Voice Kost, Rhonda G. Andrews, Joseph Chatterjee, Ranee Cheng, Alex Dozier, Ann Ford, Daniel Harris, Paul A. J Clin Transl Sci Evaluation OBJECTIVES/GOALS: Empowering the Participant Voice (EPV) is a Rockefeller-led 6-CTSA consortium that aims to collect research participant feedback through new Research Participant Perception Survey (RPPS)/REDCap infrastructure and data aggregation to a national database. Here we describe diverse Use Cases and launch dissemination to other hubs. METHODS/STUDY POPULATION: The EPV team refined the RPPS-S and developed fielding and data standards, a multi-lingual RPPS/REDCap project XML, At-a-Glance Dashboard, EPV Consortium Database, and Use Cases to align with local initiatives and stakeholder input. Sites ran full thread tests of the infrastructure before launch. To demonstrate RPPS/REDCap, 5 sites implemented Use Cases, surveyed diverse populations via email, patient portal or SMS, and analyzed results using the At-a-Glance Dashboard External module (which provides visual analytics and enables filtering by participant/study characteristics). Sites continue to collect, synthesize and respond to actionable data. To disseminate infrastructure, we will invite early adopters to implement the RPPS/REDCap infrastructure locally, joining the EPV learning collective. RESULTS/ANTICIPATED RESULTS: To date, 5 sites surveyed 10,199 research participants, at post-consent or end of study. 2833 (26%) research participants responded, from diverse demographic groups. More than 90% gave the Top Box score response regarding courtesy, respect for cultural background, privacy, and lack of pressure to join a study. Disparities were apparent in the informed consent experience, with a Top Box score range of 38-78% in different demographics. Dissatisfaction with out-of-pocket research costs was a recurring theme. Top Box scores varied for feeling like a valued partner in research (69-93%), would recommend research participation to friends or family (56%-81%), and Overall Experience (64%-90%) questions. Sites identified actionable findings in areas of consent, communication, partnership, and study conduct. DISCUSSION/SIGNIFICANCE: The EPV RPPS/REDCap infrastructure enabled sites to broadly collect participant feedback, identify actionable findings and make inter-institutional comparisons. Collaborators are designing local initiatives to increase response rate and diversity, address disparities in research participation experiences, and discover better practices. Cambridge University Press 2023-04-24 /pmc/articles/PMC10129524/ http://dx.doi.org/10.1017/cts.2023.225 Text en © The Association for Clinical and Translational Science 2023 https://creativecommons.org/licenses/by-nc-nd/4.0/This is an Open Access article, distributed under the terms of the Creative Commons Attribution-NonCommercial-NoDerivatives licence (https://creativecommons.org/licenses/by-nc-nd/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is unaltered and is properly cited. The written permission of Cambridge University Press must be obtained for commercial re-use or in order to create a derivative work.
spellingShingle Evaluation
Kost, Rhonda G.
Andrews, Joseph
Chatterjee, Ranee
Cheng, Alex
Dozier, Ann
Ford, Daniel
Harris, Paul A.
143 Wouldn’t you like to know what your research study participants are thinking? A collaboration for Empowering the Participant Voice
title 143 Wouldn’t you like to know what your research study participants are thinking? A collaboration for Empowering the Participant Voice
title_full 143 Wouldn’t you like to know what your research study participants are thinking? A collaboration for Empowering the Participant Voice
title_fullStr 143 Wouldn’t you like to know what your research study participants are thinking? A collaboration for Empowering the Participant Voice
title_full_unstemmed 143 Wouldn’t you like to know what your research study participants are thinking? A collaboration for Empowering the Participant Voice
title_short 143 Wouldn’t you like to know what your research study participants are thinking? A collaboration for Empowering the Participant Voice
title_sort 143 wouldn’t you like to know what your research study participants are thinking? a collaboration for empowering the participant voice
topic Evaluation
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10129524/
http://dx.doi.org/10.1017/cts.2023.225
work_keys_str_mv AT kostrhondag 143wouldntyouliketoknowwhatyourresearchstudyparticipantsarethinkingacollaborationforempoweringtheparticipantvoice
AT andrewsjoseph 143wouldntyouliketoknowwhatyourresearchstudyparticipantsarethinkingacollaborationforempoweringtheparticipantvoice
AT chatterjeeranee 143wouldntyouliketoknowwhatyourresearchstudyparticipantsarethinkingacollaborationforempoweringtheparticipantvoice
AT chengalex 143wouldntyouliketoknowwhatyourresearchstudyparticipantsarethinkingacollaborationforempoweringtheparticipantvoice
AT dozierann 143wouldntyouliketoknowwhatyourresearchstudyparticipantsarethinkingacollaborationforempoweringtheparticipantvoice
AT forddaniel 143wouldntyouliketoknowwhatyourresearchstudyparticipantsarethinkingacollaborationforempoweringtheparticipantvoice
AT harrispaula 143wouldntyouliketoknowwhatyourresearchstudyparticipantsarethinkingacollaborationforempoweringtheparticipantvoice