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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| http://www.ncbi.nlm.nih.gov/pmc/articles/PMC10789984 | PMC |
| http://dx.doi.org/10.1017/cts.2023.671 | DOI Listing |
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