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...

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 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