A new Midlands-wide service evaluation is underway to better understand how people living with inherited bleeding disorders access, understand and use treatment-related information to support shared decision making across the region.
The project, known as ‘Bridging the Gap’, marks the first joint effort between three of the region’s haemophilia comprehensive care centres (CCCs) in Birmingham, Leicester and Nottingham. Laurence Woollard, MSc, Director of On The Pulse, is coordinating the initiative with independent research support from Dr Rich Gorman, a social scientist – together bringing both distinct professional and lived experience insight to the delivery of the evaluation.
By generating insight that is reflective of the region’s ethnically and culturally diverse population – captured through a structured, anonymised survey across the three centres – it is hoped that the evaluation will highlight opportunities to strengthen how treatment information is communicated and understood across services, especially in the context of new and emerging therapies.
Clinical Collaborators
The evaluation is led through the West Midlands Adult Comprehensive Care Haemophilia & Thrombosis Centre, part of University Hospitals Birmingham NHS Foundation Trust, represented by Dr Gillian Lowe, Consultant Haematologist and Co-Centre Director.
Across the region, Dr Stylina (Stella) Salta, Consultant Haematologist and Centre Director at the Leicester CCC, and Dr Emily Millen, Consultant Haematologist and Co-Centre Director at the Nottingham CCC, are providing clinical leadership for their respective centres and contributing to the design and oversight of the initiative. A formal Steering Group, including clinical staff and local patient representatives, provides oversight and ensures the evaluation reflects the experiences and priorities of those receiving care.
As Dr Lowe explains:
“As multidisciplinary teams, we have the privilege of caring for people from many different backgrounds across the Midlands. With the treatment landscape in inherited bleeding disorders continuing to evolve, we face new challenges in how we communicate options clearly and support equitable decision making.
This service evaluation gives us an important opportunity to understand how people are accessing and using treatment information, highlighting where additional support may be required. My thanks go to colleagues Dr Salta and Dr Millen for their commitment to this cross-centre collaboration as well as to Laurence and Rich for their work behind the scenes.”
Next steps
The service evaluation runs from December 2025 to February 2026, with final reporting due in the spring. It is planned for interim insights to be submitted as an abstract to the International Society on Thrombosis and Haemostasis (ISTH) 2026 Congress, taking place in Paris, France between 11–15 July.
Declaration of support
This initiative is supported by unrestricted grants from Roche Products Ltd. and Chugai Pharma UK Ltd., and from Takeda UK Limited. All sponsors have provided financial support only and have had no involvement in the project.
Design credit
Project branding and design assets were developed with support from Marc Avery.
Get in touch
If you have any questions about the evaluation or would like to learn more, please contact Laurence at info@onthepulseconsultancy.com.