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Through multistakeholder collaboration, EHC Think Tank workstream members have developed strategies for system change to address challenges around lack of common purpose and data quality in patient registries, and relating to the role of the patient and patient influence in the healthcare system
Figure 1.
Workstream methodology
Summary of broad objectives and activities for EHC Think Tank workstreams
Figure 2.
Roadmap to Align Registries for 2025 and 2030
Summary of key points of action to enable the alignment of bleeding disorder registries in Europe, with a view to better supporting patient quality of life
Figure 3.
Elements of the proposed patient agency framework
Participants in the Patient Agency workstream identified individual level of engagement in their healthcare (based on personas), behavioural attribute (based on the COM-B model) and engagement with their external environment as core facets in the definition of patient agency. Image: Ia Brix Ohmann / Overlap (https://www.overlap/dk/english)