Aim: Our aim is to realize more fully the promise of patient-centred care (PCC) in the management of complex chronic diseases, like epilepsy, through a fine-grained understanding of the spaces between the provision of services and the experience(s) of living with the condition. This understanding will allow newer technologies and communication strategies, such as electronic patient portals to personalize care and improve patient involvement, to maximize well-being and quality of life.
Context: Patient-centeredness is a core value of current and emerging health service reforms. PCC recognises people within the full context of their lives, not just their health condition. Its principles include: informing and involving patients, encouraging self-management and informed decision making, eliciting and respecting patient preferences, treating patients with dignity, designing care processes that suit patient needs, ready access to health information, and continuity of care. PCC also changes the role of the healthcare professional from “experts that care for patients, to enablers that support patients to make decisions.”
Objectives: In the Irish epilepsy care domain to:
• Understand the different ways that clinicians, patients and their families/carers engage with one another.
• Identify PCC facilitators and/or inhibitors.
• Create an agency of change to continuously improve patient-centredness.
• Identify potential for mediating PCC through eHealth solutions.
Methodology: An ethnographic approach will explore the complexity and nuances of human-human and human-technology interaction in the management of epilepsy in various sites in Ireland. Simultaneous participatory action research will provide a vehicle for real-world continuous improvement of PCC.
Impact: This research will contribute to understanding the critical success factors for accomplishing PCC and set the scene for designing meaningful eHealth supports. While the domain of interest is epilepsy, the research will also be generalisable to other similarly complex chronic conditions.
