Facebook as a tool for raising awareness on rare diseases: the experience of Orphanet-Italy

The use of social media is growingly impacting the way general public looks for health related informations. This evidence is well reflected by the increasing occurrence of results, considering the past decade as reference time range, when the search string “social media” is entered in Pubmed. Like other teams of the Orphanet Network, the italian one believed in the chance offered by Facebook, Youtube and Twitter to introduce the Orphanet services to a more general audience, beyond the circle of our key stakeholders: healthcare professionals, researchers, patients and caregivers. Among the cited media, the Orphanet Italia Facebook page is our most successful one; started up in 2013, it had 1249 followers in mid 2016, about 3000 at the end of 2018 and, notably, more than 9000 at the end of 2019. The follower growth rate showed a remarcable increase since a social media expert started to manage the Facebook page, from mid 2018 until now. We investigated such a phenomenon by mean of both the Facebook Insights and the Google analytics tools, to understand if a positive correlation exists between the social media engagement and the number of visits of the Orphanet website. Interestingly, we found a positive correlation between the considered variables. Also, we analysed the users’ feedback to the contents published on the Facebook page, in order to delineate a summarizing picture of our current editorial line, using a previous work on this topic, done by our team in 2016, as reference model. The present study, to be further developed, represents a first analytical study to evaluate Facebook’s potential to introduce the general public to the quality informations provided by the Orphanet database.