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

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

The Journal of Haemophilia Practice
Volume 11 (2024): Issue 1 (January 2024)
By: Zita Gacser and  Naja Skouw-Rasmussen  
Open Access
|Feb 2024

Figures & Tables

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)
DOI: https://doi.org/10.2478/jhp-2024-0005 | Journal eISSN: 2055-3390
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Language: English
Page range: 1 - 10
Published on: Feb 26, 2024
Published by: Haemnet Ltd
In partnership with: Paradigm Publishing Services
Publication frequency: 1 issue per year
Keywords:
Registries,
Patient agency,
Mapping,
Co-creation
Related subjects:
Medicine,
Basic medical science,
Basic medical science, other,
Clinical medicine,
Clinical medicine, other,
Pharmacy,
Pharmacology

© 2024 Zita Gacser, Naja Skouw-Rasmussen, published by Haemnet Ltd
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 License.

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