The open-access paper, “System change in practice: A report from the EHC Think Tank workstreams on Registries and Patient Agency” is now published in The Journal of Haemophilia Practice.

This paper reports on outcomes and learnings from the Registries and Patient Agency workstreams. During a series of online meetings and face-to-face discussions, workstream members contributed to a three-phase process: 1. Discovery; 2. Strategy; 3. Innovation. Having identified key challenges to system change for Registries and Patient Agency, stakeholders mapped the system in which they were working to refine the challenges, recognise enablers and constraints to progress, and use leverage points to co-create strategies for change.

In the Registries workstream, actions were prioritised to improve data quality and common purpose, resulting in the development of a roadmap for aligning registries in Europe. Similarly, the Patient Agency workstream focused on enhancing patient influence in healthcare and leveraging digital tools to enable patient contributions for patient-reported outcome and experience measures, culminating in projects such as the Guidebook on Patient Agency and a patient experience data dossier for von Willebrand disease. Overall, the collaboration underscores the necessity of system change to ensure equitable healthcare access and highlights the progress made towards innovative strategies and pilot projects.

Gacser Z, Skouw-Rasmussen N; EHC Think Tank. System change in practice: A report from the EHC Think Tank workstreams on Registries and Patient Agency. J Haem Pract 2024; 11(1): 1-10. https://doi.org/10.2478/jhp-2024-0005