AIM
Our aim is to investigate the role of an electronic patient portal in promoting a paradigm of “Person- and Family-
Centred Care” (PFCC) in Epilepsy. This project will explore how the electronic portal (ePortal) can help foster a
culture of trust, transparency and collaboration to improve health and well-being. Its role in the development of
meaningful co-production partnerships between healthcare professionals, patients, families and communities will also be examined.
CONTEXT
PFCC means “putting the patient and family at the heart of every decision and empowering them to be genuine
partners in their care” and is increasingly recognised as being central to improving quality, safety and value of
healthcare services. It has a key role in the management of complex chronic conditions like epilepsy as it
recognises people within the full context of their lives, not just their health condition. By providing patients and
their care-partners with: access to and ability to co-author their healthcare record; tools for patient reported
outcomes and goal setting; and aids for patient education; ePortals have the potential to facilitate delivery of
PFCC. A recently implemented Irish National Epilepsy ePortal will be the foundation for this research.
OBJECTIVES
The project will explore how the ePortal:
Can lead to more empowered/activated patients
Enhances patient-healthcare provider partnerships
Provides a passport between different healthcare providers and healthcare sectors (e.g. for those
transitioning from paediatric to adult services, or for integrating care between hospital and community
settings).
METHODS
Using a stratified sampling of epilepsy care settings in Ireland, mixed methods will capture measures of patient
activation as well as patient, carer and healthcare professional perspectives on the usability and utility of the
epilepsy ePortal.
IMPACT
This research will contribute to understanding the benefits and risks associated with ePortal mediated PFCC
thereby informing policy regarding future similar eHealth investment.
