Engagement in Cancer Epidemiology Cohorts

Cancer epidemiology cohorts (CECs) provide key insights into genetic, environmental, lifestyle, and clinical factors influencing cancer development, progression and outcomes. Engaging communities impacted by research and participants in cohort studies is essential for building trust and ensuring the success of these studies. While the concept of engagement in cancer research is not new, the practice of engagement is evolving towards more rigorous, bidirectional relationships between researchers and communities. Here, we discuss some goals of engagement in CECs supported by the National Cancer Institute (NCI), Division of Cancer Control and Population Sciences (DCCPS), Epidemiology and Genomics Research Program (EGRP), which include: (1) involving community and participant voices in study design and implementation, (2) providing updates on study progress, (3) returning value to communities and participants, and (4) demonstrating appreciation to study participants. This paper also outlines opportunities to enhance engagement activities across cohorts such as expanding the use of digital technologies, continuing to share lessons learned, and supporting report back of findings. Additionally, strengthening evidence base on how to engage communities at all stages of research can foster more meaningful partnerships and ultimately lead to more impactful research and better health outcomes.