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

Abstract

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.

Keywords

• patient agency
• empowerment
• engagement
• cultural change
• health literacy