ArticleJMIR research protocols2017
The Use of Social Media to Recruit Participants With Rare Conditions: Lynch Syndrome as an Example.
Article in JMIR research protocols, 2017. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 15 papers.
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Who cites it
15 citing papers in PubMed.
- "It Would Ruin My Life": Pacific Islander Male Adolescents' Perceptions of Mental Health Help-Seeking-An Interpretative Phenomenological Analysis Focus Group Study.International journal of environmental research and public health · 2025Article
- Acceptance of Social Media Recruitment for Clinical Studies Among Patients With Hepatitis B: Mixed Methods Study.Journal of medical Internet research · 2024Article
- Social Media Use for Research Participant Recruitment: Integrative Literature Review.Journal of medical Internet research · 2022Review
- Ethical Issues in Social Media Recruitment for Clinical Studies: Ethical Analysis and Framework.Journal of medical Internet research · 2022Review
- A scoping review of social and behavioral science research to translate genomic discoveries into population health impact.Translational behavioral medicine · 2021Article
- Factors Impacting the Decision of an Individual With Lynch Syndrome to Terminate a Health Care Provider Relationship.Journal of patient experience · 2021Article
- Assessing mental health signals among sexual and gender minorities using Twitter data.Health informatics journal · 2020Article
- Article
- A rare disease patient/caregiver perspective on fair pricing and access to gene-based therapies.Gene therapy · 2019Review
- Mitigation of Participant Loss to Follow-Up Using Facebook: All Our Families Longitudinal Pregnancy Cohort.Journal of medical Internet research · 2019Article
- An Electronic Questionnaire for Liver Assessment in Congenital Disorders of Glycosylation (LeQCDG): A Patient-Centered Study.JIMD reports · 2019Article
- Engaging patients throughout the health system: A landscape analysis of cold-call policies and recommendations for future policy change.Journal of clinical and translational science · 2018Review
- Assessing Mental Health Signals among Sexual and Gender Minorities using Twitter Data.2018 IEEE International Conference on Healthcare Informatics Workshops : proceedings : 4-7 June 2018, New York, NY. International Conference on Healthcare Informatics (6th : 2018 : New York, N.Y.). Workshops · 2018Article
- Using Social Media Data to Understand the Impact of Promotional Information on Laypeople's Discussions: A Case Study of Lynch Syndrome.Journal of medical Internet research · 2017Article
- Article
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Authors and funding
5 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundSocial 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.
objectiveWe 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.
methodsRecruitment 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.
resultsWithin 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.
conclusionsThis 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.
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