The ACTIV-6 Stakeholder Advisory Committee: a model for virtual engagement in decentralized clinical trials.
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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.
SUBMITTER: Hamm ME
PROVIDER: S-EPMC10789984 | biostudies-literature | 2023
REPOSITORIES: biostudies-literature
Publications
The ACTIV-6 Stakeholder Advisory Committee: a model for virtual engagement in decentralized clinical trials.
Hamm Megan E ME Arnold Jonathan J Denson Josh J Edwards Talethia T Merritt Greg G McCarthy Matthew M Nelson Danielle D Phillips Kirk T KT Thicklin Florence F Vasey Andrew A McTigue Kathleen K
Journal of clinical and translational science 20231120 1
<h4>Introduction</h4>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.<h4>Methods</h4>Traditionally engagement has been conducted face-to-face in the local communities in which research operates. Decentralized platfor ...[more]
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