Social media have transformed plastic surgery, intersecting patient education, provider marketing, and academic interactions across the globe. Despite this, social media are seldom used in research. The authors sought to understand the primary incentives and deterrents for patient participation in research efforts.
Facebook groups for craniosynostosis families were identified; the largest two had 11,000 and 7200 members. Facebook group administrators were asked to post an open invitation to enroll in the authors’ study. Interested participants contacted study personnel directly. Materials and written/video instructions were provided for collecting genetic specimens. Participants completed a follow-up survey to assess satisfaction. The authors subsequently conducted virtual neurocognitive sessions for functional assessment.
Three hundred thirty-one of 384 genetic study participants (86 percent) were recruited by means of social media. Three hundred forty-three of 472 mailed packages (73 percent) were returned. Novel mutations identified explained craniosynostosis in 10 percent of participants. One hundred ninety-five families completed the follow-up survey. One hundred percent and 95 percent reported that the written and video instructions were helpful, respectively. The most frequently cited obstacles barring participation in research studies was travel to the study site (63 percent), significantly more than indirect monetary costs (p = 0.007), information confidentiality (p < 0.001), time required to participate (p < 0.001), and invasive study procedures (p < 0.001). Ninety-nine percent preferred participating in a study from home rather than a research center. Follow-up neurocognitive studies are ongoing.
With proper planning, participation in social media–based research is easy, cost-effective, and time conscious. Requiring travel to a research facility is the factor most likely to deter families from contributing to research. The results emphasize the unrealized potential of social media for advancing research in plastic surgery.
New Haven, Conn.
From the Section of Plastic and Reconstructive Surgery and the Department of Genetics, Yale University School of Medicine.
Received for publication November 7, 2017; accepted April 10, 2018.
The first two authors contributed equally to this work.
Disclosure:The authors have no financial interest to declare in relation to the content of this article.
John A. Persing, M.D., Section of Plastic and Reconstructive Surgery, Yale School of Medicine, 330 Cedar Street, 3rd Floor Boardman Building, New Haven, Conn. 06520, firstname.lastname@example.org, Andrew T. Timberlake, M.D., Ph.D., Section of Plastic and Reconstructive Surgery, Yale School of Medicine, 330 Cedar Street, 3rd Floor Boardman Building, New Haven, Conn. 06520, email@example.com