A team of researchers set out to investigate how patients with hemophilia use social medical platforms, such as Twitter, and whether their interactions on these platforms impact their quality of life in any way, according to a new study published in Haemophilia.
Many meetings traditionally conducted face-to-face have moved online. For example, physicians and researchers use social media to conduct professional research, while disease advocacy groups use social media to promote their cause and spread awareness.
There is an increasing trend toward the use of social media in patients with chronic illnesses. Studies have discovered that social media usage and interaction helps patients with chronic illnesses (such as cancer, diabetes, and hearing loss) find social and emotional support.
Nevertheless, little is known about how patients with hemophilia use social media; thus, Chen and colleagues decided to investigate. Their methodology consisted of various means to accurately capture what was happening on Twitter among the global hemophilia patient community.
Read more about hemophilia patient education
First, they picked out individuals that were driving hemophilia conversations worldwide. Second, they sorted through the various themes present in hemophilia-related tweets. Lastly, the research team assessed public perception and misconceptions about hemophilia on Twitter.
They discovered that the largest categories of users driving conversations on hemophilia on Twitter were advocacy and support groups, people with bleeding disorders, and healthcare providers. Here were some of the most common themes found on Twitter with regards to hemophilia:
- Gene therapy
- Contaminated hemophilia blood products
- Hemophilia research
- Clinical management of hemophilia
- Hemophilia and COVID-19
The research team found misinformation to be rare, however, incorrect perceptions about hemophilia did exist among the social media community.
“In conclusion, the results of our comprehensive analysis of the hemophilia community on Twitter demonstrate the importance of social media for disseminating information associated with hemophilia, highlight effective engagement strategies, and identify the need for better hemophilia education among the public,” Chen et al said.
Chen R, Muralidharan K, Samelson-Jones BJ. Digital haemophilia: insights into the use of social media for haemophilia care, research and advocacy. Haemophilia. Published online February 15, 2022. doi:10.1111/hae.14510