A machine for systems change, not just a tank that thinks.
The first workstream seeks to untangle the complexities of registries, to find common ground, and to co-construct a collectively endorsed forward direction. It focus on challenges such as data sharing, multiplicity of registries, ownership and the overall purpose of registries.
The hub & spoke model workstream explores future treatment and care pathways, building on international calls for a hub-and-spoke model approach.
This workstream on Patient Agency addresses how to meaningfully embed and integrate patient expertise up-front and throughout the design, organisation, implementation and evaluation of treatment and care as well as capturing and utilising patient preferences, for example the unmet needs of women with bleeding disorders, remains challenging.
