Why taking part in research really matters

Written by Aaron Dennis, August 26, 2021

William McKeown, a doctor in Northern Ireland – who also has severe haemophilia A – has recently been working with the Haemophilia Society to present research on British patient perspectives on living with haemophilia at an influential congress for the world’s leading experts in bleeding disorders (the International Society on Thrombosis and Haemostatis). His research highlights issues around frequency of joint bleeds, and also lower than average levels of employment and economic success among the bleeding disorder community. 

William, 30, explains, “Today we have the means for people with bleeding disorders to lead largely bleed-free lives, and a really good quality of life. However, we all know this isn’t always the reality.  

“We need to engage in research which looks at data which is meaningful to people, like ‘how is my condition affecting my employment’ (and therefore my income)? ‘How many bleeds do I have, how often am I hospitalised, and how is my quality of life?’ By finding out the answers to these questions, we can demonstrate if more needs to be done to support people with bleeding disorders, and then set about finding better solutions.  

“Bleeding disorders are rare conditions, and unless we come together as a patient group and demand to be heard, our voices will be drowned out. Join the Haemophilia Society so that, united, we have more authority. And take part in research if you can. It means that we can help positively shape future outcomes for other people living with bleeding disorders”.  

William has volunteered as the Haemophilia Society’s Access & Service Improvement Ambassador for the last year, and has also served as a patient advocate across several other organisations including at Haemophilia Northern Ireland and the European Haemophilia Consortium. His motivation is to improve the quality of care that he and his peers receive, and William’s combined personal experience and medical and research training can allow him to share the views of patients at high level forums.  

Read the full report: Real-world clinical and patient-centric outcomes in people with haemophilia A in the United Kingdom: Findings from the CHESS II study   

Find out more about William’s background and ambassador role with the Haemophilia Society