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...
| Main Authors: | , , , , , , |
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| Format: | Article |
| Language: | English |
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Cambridge University Press
2023-04-01
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| Series: | Journal of Clinical and Translational Science |
| Online Access: | https://www.cambridge.org/core/product/identifier/S205986612300225X/type/journal_article |
| _version_ | 1797840463852470272 |
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| author | Rhonda G. Kost Joseph Andrews Ranee Chatterjee Alex Cheng Ann Dozier Daniel Ford Paul A. Harris |
| author_facet | Rhonda G. Kost Joseph Andrews Ranee Chatterjee Alex Cheng Ann Dozier Daniel Ford Paul A. Harris |
| author_sort | Rhonda G. Kost |
| collection | DOAJ |
| 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. |
| first_indexed | 2024-04-09T16:15:31Z |
| format | Article |
| id | doaj.art-28b8435755ee4793984769d2f9a11abe |
| institution | Directory Open Access Journal |
| issn | 2059-8661 |
| language | English |
| last_indexed | 2024-04-09T16:15:31Z |
| publishDate | 2023-04-01 |
| publisher | Cambridge University Press |
| record_format | Article |
| series | Journal of Clinical and Translational Science |
| spelling | doaj.art-28b8435755ee4793984769d2f9a11abe2023-04-24T05:55:54ZengCambridge University PressJournal of Clinical and Translational Science2059-86612023-04-017434410.1017/cts.2023.225143 Wouldn’t you like to know what your research study participants are thinking? A collaboration for Empowering the Participant VoiceRhonda G. Kost0Joseph Andrews1Ranee Chatterjee2Alex Cheng3Ann Dozier4Daniel Ford5Paul A. Harris6The Rockefeller UniversityWake Forest University Health SciencesDuke UniversityVanderbilt UniversityUniversity of RochesterJohns Hopkins UniversityVanderbilt University EPV Steering CommitteeOBJECTIVES/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.https://www.cambridge.org/core/product/identifier/S205986612300225X/type/journal_article |
| spellingShingle | Rhonda G. Kost Joseph Andrews Ranee Chatterjee Alex Cheng Ann Dozier Daniel Ford Paul A. Harris 143 Wouldn’t you like to know what your research study participants are thinking? A collaboration for Empowering the Participant Voice Journal of Clinical and Translational Science |
| 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 |
| url | https://www.cambridge.org/core/product/identifier/S205986612300225X/type/journal_article |
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