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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...
Autores principales: | , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Cambridge University Press
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10129524/ http://dx.doi.org/10.1017/cts.2023.225 |
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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 |
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