JMIR Publications

ABSTRACT

Background:

Social media such as Facebook (FB) and Instagram (IG) are increasingly being used to share health-related information by “influencers”, regular users and institutions alike. While patients may benefit in various ways from these interactions, little is known about the type of endometriosis-related information published on social media. As digital opinion leaders influence the perception of their followers, physicians need to be aware about ideas and beliefs available online, in order to address possible misconceptions and provide optimal patient care.

Objective:

To analyze and categorize endometriosis-related social media content on Facebook and Instagram.

Methods:

We performed a systematic search using predefined parameters. Using the term “Endometriosis” in FB`s search function and a social media search engine, a list of FB pages was generated. A list of IG accounts was generated using the terms “Endometriosis” and “Endo” in IG`s search function. Pages/accounts in English with >5000 followers/likes were included. Nonpublic, unrelated or inactive pages/accounts were excluded. For each account, the most recent 10 posts were identified and categorized by two independent examiners using qualitative content analysis. User engagement was calculated using the numbers of interactions (shares, likes and comments) for each post, stratified by the number of followers.

Results:

39 FB pages and 43 IG accounts with a total number of over 1.395 million followers were identified. Hospitals/medical Centers made up for 15% (FB) and 5% (IG) of the accounts. Top accounts had up to 111.6k (FB) and 41.4k (IG) followers. A total of 820 posts were analyzed. On FB, most posts were categorized as “Awareness” (25.9% of posts), “Education & Research” (18.2%) and “Promotion” (16.4%). On IG, the top categories were “Inspiration & Support” (27.9% of posts), “Awareness” (16.7%) and “Personal Story” (16.7%). The frequency of most categories differed significantly between platforms. User engagement was higher on IG than on FB (3.20% vs 0.97% of followers per post). On IG, the highest percentage of users engaged with posts categorized as “Humor” (4.19%), “Personal Story” (3.02%), and “Inspiration & Support” (2.82%). On FB, posts in the categories “Awareness”, “Humour” and “Inspiration & Support” induced most user engagement (2.05%, 0.91% and 0.56%). Accounts from hospitals / medical centers generated a higher user engagement than regular accounts on FB (1.44% vs 0.88%), while on IG, the contrary was found (2.07% vs 3.36%).

Conclusions:

FB and IG are widely used to share endometriosis-related information among a large number of users. Most posts offer inspiration or support, spread awareness about the disease or cover personal issues. Followers mostly engage with posts of humoristic, supportive and awareness-generating nature. Healthcare providers should be aware about the topics discussed online, as this may lead to an increased understanding of the needs and demands of the digitally affine endometriosis patients.