Engaging communities has become a critical aspect of planning and implementing health research. The role community engagement should play in epidemiological and observational research remains unclear since much of this research is not directly generated by community concerns and is not interventional in nature. The National Children’s Study (NCS), an observational longitudinal study of 100,000 children and their families, provides a model to help guide the development of community engagement strategies in epidemiologic research.
Methodology
This manuscript describes community engagement activities of the NCS during the planning phases of the study.
Results
There are many challenges of community engagement in epidemiologic research particularly before the actual research sites are determined. After communities of interest are designated many further issues must be resolved, including: defining the specific community, determining which residents or institutions represent the identified community, and developing trust and rapport through respectful engagement.
Conclusions
Community engagement is critical to the long-term success of any longitudinal epidemiologic study. A partnership with the community should be formed to ensure mutual respect and the establishment of an enduring relationship. Genuine community engagement offers the hope of enhancing recruitment, retention, and participant satisfaction.
bDepartments of Medicine and Social Medicine, The University of North Carolina, Chapel Hill, NC
cAlbert Einstein College of Medicine, New York, NY.
Address correspondence to Jessica Sapienza, M.H.S., Committee Liaison Officer, The National Children’s Study, National Institute of Child Health and Human Development, National Institutes of Health, 6100 Executive Boulevard, Room 5CO1, Bethesda MD 20892.
ABSTRACT