Cargando…
471 Empowering the Participant Voice (EPV): Participant Feedback to Improve the Clinical Research Enterprise
OBJECTIVES/GOALS: Six CTSA sites formed a collaboration to DEVELOP, DEMONSTRATE, AND DISSEMINATE new infrastructure to streamline collection and analysis of research participant feedback, using the Research Participant Perception Survey (RPPS), common standards, and customized REDCap-based tools, to...
Autores principales: | , , , , , , |
---|---|
Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Cambridge University Press
2022
|
Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9209146/ http://dx.doi.org/10.1017/cts.2022.275 |
_version_ | 1784729879226351616 |
---|---|
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: Six CTSA sites formed a collaboration to DEVELOP, DEMONSTRATE, AND DISSEMINATE new infrastructure to streamline collection and analysis of research participant feedback, using the Research Participant Perception Survey (RPPS), common standards, and customized REDCap-based tools, to improve the clinical research enterprise. METHODS/STUDY POPULATION: DEVELOP charter, consensus approach, core survey, deployment standards, data-use agreements; define meta-data, system requirements for the infrastructure, use-cases. Engage stakeholders for broad institutional and community input. Build RPPS/REDCap project, visual analytics Dashboard External Module, and Program Dashboard module for evaluation. Configure to use with Multilingual Module. DEMONSTRATE by implementing site-based use cases that reflect local priorities and span diverse populations, testing different methods of survey deployment (REDCap, patient portal, SMS) to showcase utility and flexibility. Generate data for local and inter-institutional benchmarking. Refine, then DISSEMINATE new infrastructure across the Consortium and REDCap community for broader testing and uptake. RESULTS/ANTICIPATED RESULTS: The project team refined the RPPS survey for inclusivity and mode of informed consent; defined standards for survey timing, sampling, and study metadata; configured the data dictionary in English and Spanishfor use with the multi-lingual module ; developed tools for project evaluation. Stakeholder engagement identified themes of anticipated value and fears about feedback. We designed an At-a-Glance Dashboard to display survey results with detailed analytics and filters. A REDCap application programming interface will send de-identified site data to the EPV Consortium Database to support benchmarking. Full implementation began November 2021 and will scale in 2022. Dissemination to Consortium and REDCap users is ongoing through presentations and a project website (www.Rockefeller.edu/research/epv). DISCUSSION/SIGNIFICANCE: Direct feedback from representative populations about their experiences in research is essential to understand and resolve barriers to broad participation in research. Streamlined RPPS/REDCap infrastructure provides a platform for local and national benchmarking, and collection of actionable data to improve clinical research. |
format | Online Article Text |
id | pubmed-9209146 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2022 |
publisher | Cambridge University Press |
record_format | MEDLINE/PubMed |
spelling | pubmed-92091462022-07-01 471 Empowering the Participant Voice (EPV): Participant Feedback to Improve the Clinical Research Enterprise Kost, Rhonda G. Andrews, Joseph Chatterjee, Ranee Cheng, Alex Dozier, Ann Ford, Daniel Harris, Paul A. J Clin Transl Sci Workforce Development OBJECTIVES/GOALS: Six CTSA sites formed a collaboration to DEVELOP, DEMONSTRATE, AND DISSEMINATE new infrastructure to streamline collection and analysis of research participant feedback, using the Research Participant Perception Survey (RPPS), common standards, and customized REDCap-based tools, to improve the clinical research enterprise. METHODS/STUDY POPULATION: DEVELOP charter, consensus approach, core survey, deployment standards, data-use agreements; define meta-data, system requirements for the infrastructure, use-cases. Engage stakeholders for broad institutional and community input. Build RPPS/REDCap project, visual analytics Dashboard External Module, and Program Dashboard module for evaluation. Configure to use with Multilingual Module. DEMONSTRATE by implementing site-based use cases that reflect local priorities and span diverse populations, testing different methods of survey deployment (REDCap, patient portal, SMS) to showcase utility and flexibility. Generate data for local and inter-institutional benchmarking. Refine, then DISSEMINATE new infrastructure across the Consortium and REDCap community for broader testing and uptake. RESULTS/ANTICIPATED RESULTS: The project team refined the RPPS survey for inclusivity and mode of informed consent; defined standards for survey timing, sampling, and study metadata; configured the data dictionary in English and Spanishfor use with the multi-lingual module ; developed tools for project evaluation. Stakeholder engagement identified themes of anticipated value and fears about feedback. We designed an At-a-Glance Dashboard to display survey results with detailed analytics and filters. A REDCap application programming interface will send de-identified site data to the EPV Consortium Database to support benchmarking. Full implementation began November 2021 and will scale in 2022. Dissemination to Consortium and REDCap users is ongoing through presentations and a project website (www.Rockefeller.edu/research/epv). DISCUSSION/SIGNIFICANCE: Direct feedback from representative populations about their experiences in research is essential to understand and resolve barriers to broad participation in research. Streamlined RPPS/REDCap infrastructure provides a platform for local and national benchmarking, and collection of actionable data to improve clinical research. Cambridge University Press 2022-04-19 /pmc/articles/PMC9209146/ http://dx.doi.org/10.1017/cts.2022.275 Text en © The Association for Clinical and Translational Science 2022 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 | Workforce Development Kost, Rhonda G. Andrews, Joseph Chatterjee, Ranee Cheng, Alex Dozier, Ann Ford, Daniel Harris, Paul A. 471 Empowering the Participant Voice (EPV): Participant Feedback to Improve the Clinical Research Enterprise |
title | 471 Empowering the Participant Voice (EPV): Participant Feedback to Improve the Clinical Research Enterprise |
title_full | 471 Empowering the Participant Voice (EPV): Participant Feedback to Improve the Clinical Research Enterprise |
title_fullStr | 471 Empowering the Participant Voice (EPV): Participant Feedback to Improve the Clinical Research Enterprise |
title_full_unstemmed | 471 Empowering the Participant Voice (EPV): Participant Feedback to Improve the Clinical Research Enterprise |
title_short | 471 Empowering the Participant Voice (EPV): Participant Feedback to Improve the Clinical Research Enterprise |
title_sort | 471 empowering the participant voice (epv): participant feedback to improve the clinical research enterprise |
topic | Workforce Development |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9209146/ http://dx.doi.org/10.1017/cts.2022.275 |
work_keys_str_mv | AT kostrhondag 471empoweringtheparticipantvoiceepvparticipantfeedbacktoimprovetheclinicalresearchenterprise AT andrewsjoseph 471empoweringtheparticipantvoiceepvparticipantfeedbacktoimprovetheclinicalresearchenterprise AT chatterjeeranee 471empoweringtheparticipantvoiceepvparticipantfeedbacktoimprovetheclinicalresearchenterprise AT chengalex 471empoweringtheparticipantvoiceepvparticipantfeedbacktoimprovetheclinicalresearchenterprise AT dozierann 471empoweringtheparticipantvoiceepvparticipantfeedbacktoimprovetheclinicalresearchenterprise AT forddaniel 471empoweringtheparticipantvoiceepvparticipantfeedbacktoimprovetheclinicalresearchenterprise AT harrispaula 471empoweringtheparticipantvoiceepvparticipantfeedbacktoimprovetheclinicalresearchenterprise |