Social Media Use in Research: Engaging Communities in Cohort Studies to Support Recruitment and Retention

Background: This paper presents the first formal evaluation of social media (SM) use in the National Children's Study (NCS). The NCS is a prospective, longitudinal study of the effects of environment and genetics on children's health, growth and development. The Study employed a multifaceted community outreach campaign in combination with a SM campaign to educate participants and their communities about the Study. SM essentially erases geographic differences between people due to its omnipresence, which was an important consideration in this multi-site national study. Using SM in the research setting requires an understanding of potential threats to confidentiality and privacy and the role that posted content plays as an extension of the informed consent process. Objective: This pilot demonstrates the feasibility of creating linkages and databases to measure and compare SM with new content and engagement metrics. Methods: Metrics presented include basic use metrics for Facebook as well as newly created metrics to assist with Facebook content and engagement analyses. Results: Increasing Likes per month demonstrates that online communities can be quickly generated. Content and Engagement analyses describe what content of posts NCS Study Centers were using, what content they were posting about, and what the online NCS communities found most engaging. Conclusions: These metrics highlight opportunities to optimize time and effort while determining the content of future posts. Further research about content analysis, optimal metrics to describe engagement in research, the role of localized content and stakeholders, and social media use in participant recruitment is warranted.