Community Engagement in Epidemiological Research

Abstract

Objectives-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.

Community engagement in biobanking: Experiences from the eMERGE Network

“…22 Perhaps most relevant to biobank efforts, CE activities can help establish mutual understanding and trust among stakeholders with disparate interests: research participants, the general public, investigators, research and healthcare institutions, and funders. 23,24 Despite the widespread endorsement of CE efforts and a growing literature reporting the results of such projects involving large-scale genomic databases and biobanks in various countries, 25,26,27,28,29 there is a lack of information describing how engagement activities may be tailored to unique biobank contexts and communities; the role of empirical research studies versus more operationally oriented approaches (eg community advisory boards); and the impact these efforts can have on biobank policy and practice. In this report we describe community engagement efforts undertaken by six United States biobanks involved with the eMERGE Network, various outcomes from these engagements, and lessons learned.…”

Multilevel Provider-Based Sampling for Recruitment of Pregnant Women and Mother-Newborn Dyads

“…In contrast, the SC and provider might have had a previous research collaboration by guest on May 11, 2018 http://pediatrics.aappublications.org/ Downloaded from or even an adversarial experience that would require the appropriate "influentials" to help garner support for the study, beginning with buy-in from the key decision-makers and recruitment of the providers. 11 Although many participating providers had agreed to the study for altruistic reasons (eg, benefits to future generations of children), there was deep appreciation by study staff that clinical care was paramount.…”

The National Children's Study (NCS): Establishment and protection of the inferential base

“…Once consented, numerous forces may work against the NCS in maintaining the cohort and in keeping the cohort actively involved during their long participation in the project. We strongly believe [38] that community awareness and community involvement will aid immeasurably to the successful completion of the extensive (but not burdensome) system of contacts planned with the participants. Nonetheless, there are three primary areas that will pose considerable challenges for maintaining high levels of participation: respondent mobility, survey burden and loss of interest by the respondent.…”