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<sec><h3>Introduction</h3><p>Patient agency refers to the abilities and capabilities of patients to act, contribute, influence and make decisions about their healthcare. It depends on both the willingness of patients to participate and the constraints imposed by healthcare providers, services and systems. To determine the factors affecting patient agency, especially for patients with chronic, rare diseases such as haemophilia requiring lifelong care, it is important to consider the patterns, structures, and mental models that define the ecosystem that patients are a part of, irrespective of their level of engagement.</p></sec>
<sec><h3>Identifying key challenges</h3><p>At the first workshop of the EHC Think Tank Workstream on Patient Agency in December 2021, participants identified five key themes for in-depth discussion relevant to patient agency: the concept of shared decision-making (SDM), patient empowerment, the spectrum of engagement, cultural change and health literacy. The Iceberg Model was used to unpack challenges by identifying composite factors on four levels: events, patterns, structures and mental models.</p></sec>
<sec><h3>Summary</h3><p>Across the five themes, four common perceived challenges stand out: uneven relationships between patients and healthcare professionals, services and systems; paternalism and hierarchical cultures; failure to recognise problems; conservatism and resistance to change. Despite some progress towards patient empowerment, a ‘glass ceiling’ prevents patients from driving transformation and taking leadership roles in strategy, policymaking and governance. Patient engagement is fluid and those who could benefit most are least likely to engage. Health literacy is perceived as the problem of the patient, not the system, and patients rather than healthcare providers are typically expected to adapt. Preliminary suggestions for addressing these challenges include behavioural communication training for patients and healthcare professionals, a learning system for empowered patient and family care, and a level playing field for stakeholders to interact equally, leading to mutual acceptance and respect.</p></sec>
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IntroductionPatient agency refers to the abilities and capabilities of patients to act, contribute, influence and make decisions about their healthcare. It depends on both the willingness of patients to participate and the constraints imposed by healthcare providers, services and systems. To determine the factors affecting patient agency, especially for patients with chronic, rare diseases such as haemophilia requiring lifelong care, it is important to consider the patterns, structures, and mental models that define the ecosystem that patients are a part of, irrespective of their level of engagement.
Identifying key challengesAt the first workshop of the EHC Think Tank Workstream on Patient Agency in December 2021, participants identified five key themes for in-depth discussion relevant to patient agency: the concept of shared decision-making (SDM), patient empowerment, the spectrum of engagement, cultural change and health literacy. The Iceberg Model was used to unpack challenges by identifying composite factors on four levels: events, patterns, structures and mental models.
SummaryAcross the five themes, four common perceived challenges stand out: uneven relationships between patients and healthcare professionals, services and systems; paternalism and hierarchical cultures; failure to recognise problems; conservatism and resistance to change. Despite some progress towards patient empowerment, a ‘glass ceiling’ prevents patients from driving transformation and taking leadership roles in strategy, policymaking and governance. Patient engagement is fluid and those who could benefit most are least likely to engage. Health literacy is perceived as the problem of the patient, not the system, and patients rather than healthcare providers are typically expected to adapt. Preliminary suggestions for addressing these challenges include behavioural communication training for patients and healthcare professionals, a learning system for empowered patient and family care, and a level playing field for stakeholders to interact equally, leading to mutual acceptance and respect.

Patient agency: key questions and challenges – A report from the 1st workshop of the EHC Think Tank Workstream on Patient Agency

The Journal of Haemophilia Practice

This work is licensed under the Creative Commons Attribution-NonCommercial-NoDerivatives 3.0 License.

IntroductionPatient agency refers to the abilities and capabilities of patients to act, contribute, influence and make decisions about their healthcare. It...

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

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.

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

Published Online: Mar 29, 2022

Page range: 27 - 35

DOI: https://doi.org/10.2478/jhp-2022-0004

KeywordsPatient 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.

Keywords
Patient agency, Empowerment, Engagement, Cultural change, Health literacy