1. The ACTIV-6 Stakeholder Advisory Committee: a model for virtual engagement in decentralized clinical trials
- Author
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Megan E. Hamm, Jonathan Arnold, Josh Denson, Talethia Edwards, Greg Merritt, Matthew McCarthy, Danielle Nelson, Kirk T. Phillips, Florence Thicklin, Andrew Vasey, and Kathleen McTigue
- Subjects
Patient participation ,community participation ,stakeholder participation ,engagement ,research design ,Medicine - Abstract
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.
- Published
- 2023
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