#Endometriosis Influencers on Instagram: Who Are They and What Are They Posting?

Study Objective This study examines endometriosis-related hashtags and accounts on Instagram including authors of the posts and common themes, tones, and emotions emerging from the content posted. Design This is a mixed methods cross-sectional observational study performed on June 6, 2021. A list of 30 hashtags associated with endometriosis were searched on Instagram and the top 20 and 10 most recent posts were assessed. Additionally, a list of 10 terms associated with endometriosis were searched under the accounts section and the first 30 were examined. Posts were categorized into themes, tone and emotion portrayed. Accuracy of the educational posts were cross-referenced against peer-reviewed scientific journals. The author of posts and activity level of accounts were assessed. Setting Publicly available data on Instagram. Patients or Participants N/A. Interventions N/A. Measurements and Main Results In total, 770 posts were identified and 59.4% had endometriosis related content. Social support was the most common theme (67.0%) followed by personal narrative (47.5%) and education (31.3%). It was found that 43.8% of the posts had a negative tone and sadness was the most common emotion portrayed (57.5%), followed by compassion (49.9%) and anger (39.4%). In total, 227 accounts were searched and 92.1% were related to endometriosis. Most of the authors of endometriosis related accounts were patients (60.3%), followed by organizations (9.1%), and healthcare providers (2.9%). Healthcare providers received the most number of likes per post in the month of June on average. Furthermore, 68.5% of posts in the education category had accurate information. Conclusion Most of the endometriosis related Instagram content is written by patients, offering social support and sharing personal narratives, highlighting a unifying emotional connection within the endometriosis community on Instagram. Increasing physician presence on Instagram may facilitate increased accurate education about endometriosis. Although there are fewer healthcare providers on Instagram, they receive more likes on average and, therefore, have widespread reach to endometriosis patients. This study examines endometriosis-related hashtags and accounts on Instagram including authors of the posts and common themes, tones, and emotions emerging from the content posted. This is a mixed methods cross-sectional observational study performed on June 6, 2021. A list of 30 hashtags associated with endometriosis were searched on Instagram and the top 20 and 10 most recent posts were assessed. Additionally, a list of 10 terms associated with endometriosis were searched under the accounts section and the first 30 were examined. Posts were categorized into themes, tone and emotion portrayed. Accuracy of the educational posts were cross-referenced against peer-reviewed scientific journals. The author of posts and activity level of accounts were assessed. Publicly available data on Instagram. N/A. N/A. In total, 770 posts were identified and 59.4% had endometriosis related content. Social support was the most common theme (67.0%) followed by personal narrative (47.5%) and education (31.3%). It was found that 43.8% of the posts had a negative tone and sadness was the most common emotion portrayed (57.5%), followed by compassion (49.9%) and anger (39.4%). In total, 227 accounts were searched and 92.1% were related to endometriosis. Most of the authors of endometriosis related accounts were patients (60.3%), followed by organizations (9.1%), and healthcare providers (2.9%). Healthcare providers received the most number of likes per post in the month of June on average. Furthermore, 68.5% of posts in the education category had accurate information. Most of the endometriosis related Instagram content is written by patients, offering social support and sharing personal narratives, highlighting a unifying emotional connection within the endometriosis community on Instagram. Increasing physician presence on Instagram may facilitate increased accurate education about endometriosis. Although there are fewer healthcare providers on Instagram, they receive more likes on average and, therefore, have widespread reach to endometriosis patients.