Patient agency: key questions and challenges – A report from the 1st workshop of the EHC Think Tank Workstream on Patient Agency Article Category: Systems Change Publié en ligne: 29 mars 2022 Pages: 27 - 35 © 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)