Using social media to educate women and healthcare providers on endometriosis: preliminary results

Abstract

and 127 posts have been published up to December 2017. Most of its 1746 fans (89% women; 11% men) were Brazilians (n=1677). Our audience comprised primarily women aged 25-34 (39%) and 35-44 (30%) years. The most viewed posts discussed thrombosis and oral contraceptives (n =11078); continuous use of oral contraceptives (n=6448); deep endometriosis (n=4425); intrauterine levonorgestrel system (n=4045); IVF and endometriosis (n=2885); and endometriosis and cancer (n=2431). Our search found 399 Facebook pages from 44 different countries. The United States (n=81), Brazil (n=49), and the United Kingdom (n=46) topped the list of countries hosting pages, while most of the fan pages were written in English. The majority of the pages were active and 20% claimed they were based on science. Physicians administered four of the 10 most popular pages. Page heterogeneity prevented comparisons between them. Conclusion: Men and women have visited our Facebook fan page to obtain information on endometriosis. The pages found in our search were exceedingly heterogeneous and were not compared. Developing pages with sound information is an important step toward educating individuals about endometriosis and helping them make informed choices on available treatments.

Relationship between onset of symptoms and diagnostic delay in women with endometriosis

“…to arrange for or at least support their consultation with a doctor. A prerequisite for population-wide improvement in the level of knowledge is the development of target group-specific information materials and the identification of comprehensive access routes [33][34][35][36]. In this time of intensive use of social media and Google as ubiquitous advisors, an attempt should be made to use these possibilities for improving the information situation at the population level.…”

Gynecology Meets Big Data in the Disruptive Innovation Medical Era: State-of-Art and Future Prospects

“…In conclusion, based on this literature overview, we can state that physicians, and in particular gynecologists, should become aware of the increasing role of new media and social networks in contemporary society. Patients surf the web to retrieve information about their condition and share details with other patients, creating online communities [ 59 , 60 ]. However, patients have a higher chance of encountering websites spreading biased, inaccurate, and misleading material.…”

“…However, patients have a higher chance of encountering websites spreading biased, inaccurate, and misleading material. As such, doctors should significantly strengthen their presence online and make better use of this means of interaction with patients [ 60 , 61 ]. Physicians’ communication, while preserving trustworthiness and scholarly rigor, should be accessible to the lay public, aiming at improving their health literacy, promoting healthy lifestyles, and increasing and enhancing the awareness of preventative strategies.…”

Regarding “Health Information in the Era of Social Media: An Analysis of the Nature and Accuracy of Posts Made by Public Facebook Pages for Patients with Endometriosis”

“…Endometriosis is a chronic benign disease that may affect millions of women worldwide and attracts social media attention. The topic, however, has been scarcely studied; a PubMed search using the terms "Facebook" and "endometriosis" revealed only 5 articles, 2 of which focused on endometriosis-related Facebook pages and their content: ours [3] and the study under discussion [1].…”

“…It would have been interesting to see if there were any differences in terms of scientific accuracy in the posts analyzed as well as define post authorship. We found in our search, which included 499 Facebook pages in English, Spanish, and Portuguese, that the pages were extremely heterogeneous [3].…”