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

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