Digital Opinion Leaders - Hemophilia

Read Roberts | August 17, 2021

Hemophilia is a genetic disorder that impairs blood clotting. When one of the genes that encode for blood clotting factors is absent, the smallest injury can trigger serious bleeding episodes. Worldwide, there are over 187,000 people living with hemophilia.

Outlook for patients with hemophilia today is much better than it was before the 1960s when factor clotting medicines were developed, but life expectancy is correlated highly with patients receiving the proper treatment. Digital and social media’s capacity for communication of new treatments can help patients and other HCPs stay on top of the latest clinical news.

For this month’s identification case study, we used our proprietary Digital Opinion Leader identification system to highlight 10 of the top HCP social media opinion leaders and to understand how they are communicating with one another and their audiences.

See the full Hemophilia Digital Opinion Leader dashboard here.

In reviewing the Hemophilia DOL Dashboard, here are our top 5 takeaways:


The ISTH 2021 (International Society on Thrombosis and Haemostasis) Conference event was widely discussed. With over 149 discussions around the #ISTH2021 hashtag it was the most talked-about keyword among this group over the past 2 months. The virtual conference ran July 17-21, and HCPs in this group shared interesting presentations, follow-up thoughts, and congratulatory messages before, during, and after the congress.


A tight network. Because Hemophilia is a rare disease, the network among these experts is among the strongest we’ve seen. Most everyone in this group of 10 corresponds and mentions one another, despite being located geographically across the globe. One widely interacted-with expert in the group was Dr. Michael Makris, Professor of Haemostasis and Thrombosis at The University of Sheffield, UK. He was tagged in 72 other expert conversations in recent months (as of August 17, 2021).

Migraine Digital Opinion Leader Network


Leaders in Twitter. Dr. Angela Weyand of the University of Michigan had the strongest Twitter-based audience – with over 22,000 followers and an extended reach of over 1.4 million when shares of her messages are included. Her messaging on health inequity between different groups of people clearly was of interest to the healthcare community


Posts show a growing awareness effort on women with hemophilia. Because the disease mutation is inherited via the X chromosome, it occurs more rarely in women and has not been a focus of research and treatment for women. In the past month, this looks to be changing – the ISTH defined a new nomenclature for hemophilia in women and girls, and the associated studies are being widely spread and championed among our DOL group.


A recent study on hemophilia is receiving a lot of attention. B cell-activating factor modulates the factor VIII immune response in hemophilia A, published in April of this year, reported a crucial discovery that could mitigate and eliminate immune responses causing treatment failure in almost one-third of people with acute hemophilia A. The story continues to be picked up in the life science press and social media posts.

We hope this look at digital experts in the field of hemophilia has been helpful and insightful – please reach out to our team at PRECISIONscientia to learn more about our Digital Opinion Leader identification and profiling service, DOLMap.

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