A machine for systems change, not just a tank that thinks.
We’re thrilled to share an outcome of our 2023 Innovation Summit where the EHC Think Tank Patient Agency workstream developed the Guidebook on Patient Agency – Challenges & Interventions.
The second paper from the workstreams on Access Equity and Future Care Pathways in which workstream members identified a ‘guiding star’ determining the direction of ongoing focus, defined achievable ‘near star’ milestones, and enablers and constraints to achieving these is now published.
The Registries 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.
The Patient Agency workstream 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.