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System change in practice: A report from the EHC Think Tank workstreams on Registries and Patient Agency

Zita Gacser

Zita Gacser

European Haemophilia ConsortiumBrussels, Belgium
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Gacser, Zita
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Naja Skouw-Rasmussen

Naja Skouw-Rasmussen

European Haemophilia ConsortiumBrussels, Belgium
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Skouw-Rasmussen, Naja
  
Feb 26, 2024
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Article Category: Systems Change
Published Online: Feb 26, 2024
Page range: 1 - 10
DOI: https://doi.org/10.2478/jhp-2024-0005
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© 2024 Zita Gacser et al., published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License.
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
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
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
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)
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)
Language:
English
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1 times per year
Journal Subjects:
Medicine, Basic Medical Science, Basic Medical Science, other, Clinical Medicine, Clinical Medicine, other, Pharmacy, Pharmacology
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