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Journals
The Journal of Haemophilia Practice
Volume 9 (2022): Issue 1 (January 2022)
Open Access
Patient agency: key questions and challenges – A report from the 1st workshop of the EHC Think Tank Workstream on Patient Agency
Amanda Bok
Amanda Bok
,
Declan Noone
Declan Noone
and
Naja Skouw-Rasmussen
Naja Skouw-Rasmussen
| Mar 29, 2022
The Journal of Haemophilia Practice
Volume 9 (2022): Issue 1 (January 2022)
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Article Category:
Systems Change
Published Online:
Mar 29, 2022
Page range:
27 - 35
DOI:
https://doi.org/10.2478/jhp-2022-0004
Keywords
Patient agency
,
Empowerment
,
Engagement
,
Cultural change
,
Health literacy
© 2022 Amanda Bok et al., published by Sciendo
This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.
Uneven patient-clinician relationships, paternalism, hierarchical cultures and resistance to change are among the key challenges identified in ensuring that patients with lifelong rare diseases, such as haemophilia, are empowered to engage with and share in decision-making around their care© Shutterstock
Figure 1
Iceberg Model template used to identify events, patterns, structures and mental models in challenges for patient agency. Image: Ia Brix Ohmann / Overlap (https://www.overlap.dk/english)