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 focuses 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.
The Access Equity workstream aims to explore health economics, from the evidence base to payment and distribution models, getting patient organisations more centrally and formally involved in the entire process, and considering the behavioural science that can be applied to achieve all of the above.
The Future Care Pathways workstream explores care beyond provision of specific treatment products, widening the focus on to physical and non-physical pathways, the integration and use of digital tools, including artificial intelligence (AI), consideration of mental health, and the science involved in driving behavioural change.