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. 2022 Dec 7:13:1084047.
doi: 10.3389/fendo.2022.1084047. eCollection 2022.

Top 100 #PCOS influencers: Understanding who, why and how online content for PCOS is influenced

Maiar Elhariry  1 , Kashish Malhotra  2 , Michelle Solomon  3 , Kashish Goyal  4 , Punith Kempegowda  5   6
Affiliations

Top 100 #PCOS influencers: Understanding who, why and how online content for PCOS is influenced

Maiar Elhariry et al. Front Endocrinol (Lausanne). .

Abstract

Background: With the exponential increase in digital space of social media platforms, a new group called social media influencers are driving online content of polycystic ovary syndrome (PCOS) which eventually influences behaviour and decision-making process. The objective of this study was to identify the top 100 social media (Twitter) influencers and organizations from across the globe who are advocating for PCOS. We further explored the origin and journey of these social media influencers.

Methods: We identified the top 100 PCOS influencers and organizations between July and August 2022 using three social network analysis tools- Cronycle, Symplur and SocioViz. These influencers were invited to a semi-structured interview to explore why they chose to become an influencer and the support they have to deliver their online content. Two independent authors coded the anonymised transcripts from these interviews and broad themes were identified by thematic inductive analysis.

Results: 95.0% of individual influencers and 80% of organisations are from high-income countries. Most influencers in our study agree that social media is an essential tool in the present day to raise awareness of PCOS. However, they reiterated social media also has significant disadvantages that require consideration and caution. Most influencers were driven by poor personal experience and worked voluntarily to reduce misinformation and improve the experiences of women diagnosed with PCOS in the future. Although there is an interest in working together, there is currently minimal collaborative work between influencers.

Conclusion: There is a global inequity of #PCOS influencers online. Establishing standards and support based on evidence may help develop more influencers, especially in low- and middle-income countries, so we can counter misinformation and provide locally acceptable guidance.

Keywords: PCOS; high-income countries; influencers; low- and middle-income countries; polycystic ovary syndrome; social media.

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Conflict of interest statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

Figures

Figure 1
Figure 1
Geographic spread of top 100 influencers for PCOS. The world map is for diagrammatic representation only and doesn't purport to be the political map of any country.
See this image and copyright information in PMC

References

    1. Liu J, Wu Q, Hao Y, Jiao M, Wang X, Jiang S, et al. Measuring the global disease burden of polycystic ovary syndrome in 194 countries: Global burden of disease study 2017. Hum Reprod (2021) 36(4):1108–19. doi: 10.1093/humrep/deaa371 - DOI - PMC - PubMed
    1. Joham AE, Norman RJ, Stener-Victorin E, Legro RS, Franks S, Moran LJ, et al. Polycystic ovary syndrome. Lancet Diabetes Endocrinol (2022) 10(9):668–80. doi: 10.1016/S2213-8587(22)00163-2 - DOI - PubMed
    1. Kempegowda P, Melson E, Manolopoulos KN, Arlt W, O’Reilly MW. Implicating androgen excess in propagating metabolic disease in polycystic ovary syndrome. Ther Adv Endocrinol Metab (2020) 11:2042018820934319. doi: 10.1177/2042018820934319 - DOI - PMC - PubMed
    1. Freberg K, Graham K, McGaughey K, Freberg LA. Who are the social media influencers? a study of public perceptions of personality. Public Relat Rev (2011) 37(1):90–2. doi: 10.1016/j.pubrev.2010.11.001 - DOI
    1. Pilgrim K, Bohnet-Joschko S. Selling health and happiness how influencers communicate on instagram about dieting and exercise: Mixed methods research. BMC Public Health (2019) 19(1):1–9. doi: 10.1186/s12889-019-7387-8 - DOI - PMC - PubMed