The ACTIV-6 Stakeholder Advisory Committee: a model for virtual engagement in decentralized clinical trials
Abstract Introduction: Engaging patients, caregivers, and other stakeholders to help guide the research process is a cornerstone of patient-centered research. Lived expertise may help ensure the relevance of research questions, promote practices that are satisfactory to research participants, impr...
| Main Authors: | , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
| Published: |
Cambridge University Press
2023-01-01
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| Series: | Journal of Clinical and Translational Science |
| Subjects: | |
| Online Access: | https://www.cambridge.org/core/product/identifier/S2059866123006714/type/journal_article |
| _version_ | 1797387708607234048 |
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| author | Megan E. Hamm Jonathan Arnold Josh Denson Talethia Edwards Greg Merritt Matthew McCarthy Danielle Nelson Kirk T. Phillips Florence Thicklin Andrew Vasey Kathleen McTigue |
| author_facet | Megan E. Hamm Jonathan Arnold Josh Denson Talethia Edwards Greg Merritt Matthew McCarthy Danielle Nelson Kirk T. Phillips Florence Thicklin Andrew Vasey Kathleen McTigue |
| author_sort | Megan E. Hamm |
| collection | DOAJ |
| description |
Abstract
Introduction:
Engaging patients, caregivers, and other stakeholders to help guide the research process is a cornerstone of patient-centered research. Lived expertise may help ensure the relevance of research questions, promote practices that are satisfactory to research participants, improve transparency, and assist with disseminating findings.
Methods:
Traditionally engagement has been conducted face-to-face in the local communities in which research operates. Decentralized platform trials pose new challenges for the practice of engagement. We used a remote model for stakeholder engagement, relying on Zoom meetings and blog communications.
Results:
Here we describe the approach used for research partnership with patients, caregivers, and clinicians in the planning and oversight of the ACTIV-6 trial and the impact of this work. We also present suggestions for future remote engagement.
Conclusions:
The ACTIV-6 experience may inform proposed strategies for future engagement in decentralized trials.
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| first_indexed | 2024-03-08T22:28:57Z |
| format | Article |
| id | doaj.art-0961350250c84397beb6e3c4276cdecb |
| institution | Directory Open Access Journal |
| issn | 2059-8661 |
| language | English |
| last_indexed | 2024-03-08T22:28:57Z |
| publishDate | 2023-01-01 |
| publisher | Cambridge University Press |
| record_format | Article |
| series | Journal of Clinical and Translational Science |
| spelling | doaj.art-0961350250c84397beb6e3c4276cdecb2023-12-18T06:40:32ZengCambridge University PressJournal of Clinical and Translational Science2059-86612023-01-01710.1017/cts.2023.671The ACTIV-6 Stakeholder Advisory Committee: a model for virtual engagement in decentralized clinical trialsMegan E. Hamm0https://orcid.org/0000-0002-7842-5290Jonathan Arnold1Josh Denson2Talethia Edwards3Greg Merritt4Matthew McCarthy5Danielle Nelson6Kirk T. Phillips7Florence Thicklin8Andrew Vasey9Kathleen McTigue10Division of General Internal Medicine, University of Pittsburgh, Pittsburgh, PA, USADivision of General Internal Medicine, University of Pittsburgh, Pittsburgh, PA, USASection of Pulmonary, Critical Care, and Environmental Medicine, Tulane University School of Medicine, New Orleans, LA, USAOneFlorida Clinical Research Network, Gainseville, FL, USAPatient Is Partner, LLC, Brighton, MI, USADepartment of Medicine, Weill Cornell Medicine, New York, NY, USADepartment of Community Health and Family Medicine, University of Florida College of Medicine, Gainesville, FL, USADepartment of Epidemiology, University of Iowa, Iowa City, IA, USACAPriCORN Clinical Research Network, Chicago, IL, USADivision of General Internal Medicine, University of Nebraska Medical Center, Omaha, NE, USADivision of General Internal Medicine, University of Pittsburgh, Pittsburgh, PA, USA Abstract Introduction: Engaging patients, caregivers, and other stakeholders to help guide the research process is a cornerstone of patient-centered research. Lived expertise may help ensure the relevance of research questions, promote practices that are satisfactory to research participants, improve transparency, and assist with disseminating findings. Methods: Traditionally engagement has been conducted face-to-face in the local communities in which research operates. Decentralized platform trials pose new challenges for the practice of engagement. We used a remote model for stakeholder engagement, relying on Zoom meetings and blog communications. Results: Here we describe the approach used for research partnership with patients, caregivers, and clinicians in the planning and oversight of the ACTIV-6 trial and the impact of this work. We also present suggestions for future remote engagement. Conclusions: The ACTIV-6 experience may inform proposed strategies for future engagement in decentralized trials. https://www.cambridge.org/core/product/identifier/S2059866123006714/type/journal_articlePatient participationcommunity participationstakeholder participationengagementresearch design |
| spellingShingle | Megan E. Hamm Jonathan Arnold Josh Denson Talethia Edwards Greg Merritt Matthew McCarthy Danielle Nelson Kirk T. Phillips Florence Thicklin Andrew Vasey Kathleen McTigue The ACTIV-6 Stakeholder Advisory Committee: a model for virtual engagement in decentralized clinical trials Journal of Clinical and Translational Science Patient participation community participation stakeholder participation engagement research design |
| title | The ACTIV-6 Stakeholder Advisory Committee: a model for virtual engagement in decentralized clinical trials |
| title_full | The ACTIV-6 Stakeholder Advisory Committee: a model for virtual engagement in decentralized clinical trials |
| title_fullStr | The ACTIV-6 Stakeholder Advisory Committee: a model for virtual engagement in decentralized clinical trials |
| title_full_unstemmed | The ACTIV-6 Stakeholder Advisory Committee: a model for virtual engagement in decentralized clinical trials |
| title_short | The ACTIV-6 Stakeholder Advisory Committee: a model for virtual engagement in decentralized clinical trials |
| title_sort | activ 6 stakeholder advisory committee a model for virtual engagement in decentralized clinical trials |
| topic | Patient participation community participation stakeholder participation engagement research design |
| url | https://www.cambridge.org/core/product/identifier/S2059866123006714/type/journal_article |
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