Opportunities and pitfalls of social media research in rare genetic diseases: a systematic review. Genet Med 2021 Dec;23(12):2250-2259
Date
07/21/2021Pubmed ID
34282302Pubmed Central ID
PMC8720387DOI
10.1038/s41436-021-01273-zScopus ID
2-s2.0-85110641357 (requires institutional sign-in at Scopus site) 34 CitationsAbstract
PURPOSE: Social media may be particularly valuable in research in rare genetic diseases because of the low numbers of patients and the rare disease community's robust online presence. The goal of this systematic review was to understand how social media is currently used in rare disease research and the characteristics of the participants in these studies.
METHODS: We conducted a systematic review of six databases to identify studies published in English between January 2004 and November 2020, of which 120 met inclusion criteria.
RESULTS: Most studies were observational (n = 114, 95.0%) and cross-sectional (n = 107, 89.2%), and more than half (n = 69, 57.5%) utilized only surveys. Only 101 rare diseases were included across all studies. Participant demographics, when reported, were predominantly female (70.1% ± 22.5%) and white (85.0% ± 11.0%) adult patients and caregivers.
CONCLUSION: Despite its potential benefits in rare disease research, the use of social media is still methodologically limited and the participants reached may not be representative of the rare disease population by gender, race, age, or rare disease type. As scholars explore using social media for rare disease research, careful attention should be paid to representativeness when studying this diverse patient community.
Author List
Miller EG, Woodward AL, Flinchum G, Young JL, Tabor HK, Halley MCAuthor
Meghan C. Halley PhD, BA, MPH Assistant Professor in the Institute for Health and Humanity department at Medical College of WisconsinMESH terms used to index this publication - Major topics in bold
AdultCaregivers
Cross-Sectional Studies
Female
Humans
Rare Diseases
Social Media
