Digital haemophilia: Insights into the use of social media for haemophilia care, research and advocacy.

Abstract

The haemophilia community on Twitter is diverse, consisting of advocacy groups, patients, physicians, researchers and other users. However, the scope of this community is uncharacterized, and limited data is available regarding effective participation in this community. To assess the types of users active in the haemophilia community on Twitter, as well as major themes present in haemophilia-related tweets. Forty-nine thousand five hundred and twelve tweets between September 2019 and September 2021 were classified using regular expressions. A subset of the classified tweets was manually analysed to identify prevalent discussion themes. Among the top 250 users by post count, the largest categories of users were support and advocacy groups, people with bleeding disorders and healthcare providers. The largest thematic categories of tweets were gene therapy, contaminated haemophilia blood products, haemophilia research, clinical management of haemophilia and COVID-19. While misinformation was rare, negative and incorrect perceptions of haemophilia were present among the general public. Our results demonstrate patterns of effective Twitter usage for patient care, research and advocacy purposes among the haemophilia community.