DiBenedetti D, Coles T, Sharma T. Recruiting patients with a rare blood disorder and their caregivers through social media. Poster presented at the 2013 ISPOR 18th Annual International Meeting; April 23, 2013. [abstract] Value Health. 2013 May; 16(3):A51.

OBJECTIVES: Recruiting research participants with experiences relevant to rare diseases (patients and caregivers) remains a constant challenge. Researchers often rely on patient advocacy or support groups as well as clinician referrals, which each present unique recruitment issues. Social media sites, such as Facebook, can potentially be helpful in recruiting patients for many study types, particularly those involving hard-to-reach populations. However, little is known about the value of social media in recruiting populations with rare medical conditions. In this study, Facebook was used to recruit adult patients and parents of children with hemophilia A for participation in a Web-based survey.

METHODS: A cross-sectional study was developed to better understand patient and caregiver experiences and behaviors associated with treatments for hemophilia A. Members of three local or national blood disorder organizations in the United States and Canada were invited to complete a Web-based survey via postings on each organizations' Web site and/or e-mail invitations sent to each organizations' member lists. Additionally, two organizations posted advertisements about the study on their respective Facebook pages. A nominal donation was made to each organization for their assistance in study recruitment.

RESULTS: Of the 145 individuals who responded to survey invitations, 101 (70%) completed the survey questionnaire. More than half (58%) of the completed questionnaires were from respondents recruited through Facebook who were a mean age of 35.8 years (SD = 8.3), similar to those recruited through more standard methods. The organization that did not post a study advertisement on Facebook recruited the fewest participants (only 13% of the total respondents).

CONCLUSIONS: This real-world study emphasizes the assistance and value of social media in study recruitment. Use of social media in recruiting can be an efficient means of reaching large numbers of potential respondents.

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