Summary:

Currently, patients and community members have more frequent interaction with clinical and population scientists than basic scientists, leading to gaps in their engagement across the cancer research continuum. Engaging patients and community members in all types of cancer research can bring personal experiences and societal factors to the forefront, informing scientists about these concerns and leading to research that is more responsive to patient and community needs. Engaging patients with cancer and community members as partners in research helps ensure that the scientific evidence generated is useful to patients and—more importantly—trusted by patients. This bidirectional engagement between patients/community members and research investigators fosters a collaborative and ethical foundation for scientific discovery. Although community-engaged research has been in existence for decades, more recent attention by national organizations to embed patients with cancer and community members into the research process has accelerated the importance of these efforts. Here, we describe the importance of patient and community engagement (PCE) in cancer research. We outline key principles in undertaking PCE in cancer research, provide a framework for PCE throughout the cancer research continuum, review metrics for evaluating the effectiveness of PCE in cancer research, and share opportunities for PCE in cancer research going forward.

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