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. 2017 Jan 23;6(1):e12.
doi: 10.2196/resprot.6066.

The Use of Social Media to Recruit Participants With Rare Conditions: Lynch Syndrome as an Example

Allison M Burton-Chase  1 , Wendy M Parker  1 , Kelsey Hennig  1 , Faith Sisson  1 , Linda L Bruzzone  2
Affiliations

The Use of Social Media to Recruit Participants With Rare Conditions: Lynch Syndrome as an Example

Allison M Burton-Chase et al. JMIR Res Protoc. .

Abstract

Background: Social media is increasingly being used as a means of recruiting participants, particularly for investigators whose areas of interest involve rare conditions or hard-to-reach populations. However, much of the literature to date has focused on paid advertisement recruitment.

Objective: We used Lynch syndrome (LS), a rare hereditary cancer syndrome, as a model to demonstrate the successful partnership between researchers and a Web-based patient education and advocacy organization to facilitate participant recruitment.

Methods: Recruitment was undertaken in partnership with Lynch Syndrome International (LSI), an advocacy organization with a strong social media presence. After LSI published our study information, participants followed up via email or phone call. Following prescreening and consent, interested and eligible participants were then sent a secure survey link.

Results: Within 36 hours of a single Facebook post by the site administrators for LSI, over 150 individuals responded via phone or email. Sixty-five individuals were sent the survey link and 57 individuals completed the survey (88% response rate). Of note, these 57 individuals were geographically diverse within the Unites States, representing LS patients from 26 different states.

Conclusions: This approach has several advantages, including recruitment through a trusted source outside of a clinical setting, higher response rates, and cost-effectiveness with a small research team in a relatively short amount of time. Overall, social media recruitment with a trusted online partner can be highly effective in hard-to-reach clinical populations, such as patients with LS. However, this approach requires additional effort for eligibility screening.

Keywords: Lynch syndrome; data collection; participation rates; response rates; social media recruitment.

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Conflict of interest statement

Conflicts of Interest: None declared.

Figures

Figure 1
Figure 1
Recruitment process and outcomes.
Figure 2
Figure 2
Facebook recruitment post.
Figure 3
Figure 3
Thank you Facebook post.
See this image and copyright information in PMC

References

    1. Kuehn BM. Patients go online seeking support, practical advice on health conditions. JAMA. 2011 Apr 27;305(16):1644–5. doi: 10.1001/jama.2011.509.305/16/1644 - DOI - PubMed
    1. Morgan T, Schmidt J, Haakonsen C, Lewis J, Della RM, Morrison S, Biesecker B, Kaphingst KA. Using the internet to seek information about genetic and rare diseases: a case study comparing data from 2006 and 2011. JMIR Res Protoc. 2014 Feb 24;3(1):e10. doi: 10.2196/resprot.2916. http://www.researchprotocols.org/2014/1/e10/ v3i1e10 - DOI - PMC - PubMed
    1. Facebook Company Info. 2017. [2017-01-13]. https://newsroom.fb.com/company-info/
    1. Lynch Syndrome International Facebook Page. 2017. [2017-01-13]. https://www.facebook.com/LynchSyndromeInternational/
    1. Fenner Y, Garland SM, Moore EE, Jayasinghe Y, Fletcher A, Tabrizi SN, Gunasekaran Bharathy, Wark John D. Web-based recruiting for health research using a social networking site: an exploratory study. J Med Internet Res. 2012 Feb 01;14(1):e20. doi: 10.2196/jmir.1978. http://www.jmir.org/2012/1/e20/ v14i1e20 - DOI - PMC - PubMed

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