Co-producing health and well-being in partnership with patients, families and communities: the role of the epilepsy patient portal

Claire a 35 year old teacher with a 10 year history of epilepsy attends the Galway University Hospital (GUH) where an electronic patient record (EPR) is used by the epilepsy service. Recently on a weekend trip to Waterford, Claire had a seizure resulting in a fall in the street and a minor injury. She was taken to the emergency department (ED) at Waterford University Hospital (WUH). Claire was post-ictal and found it difficult to recall relevant information that the doctor in WUH was asking. She told the doctor her epilepsy information was available on an EPR used in GUH. However the WUH doctor did not have access to the EPR. Claire thought that if she had access to her EPR via her smartphone she could have shared the relevant information with the doctor. Claire also felt that this would help put her in more control and help the doctor to address her needs more effectively. 
This example shows how an electronic patient portal (ePortal) providing access to the individual’s own health data can promote better Person- and Family-Centred Care (PFCC), and put the patient and family at the heart of every decision and empower them to be genuine partners in care. While potential PFCC benefits of ePortals are clear, facilitators and barriers to realising the promise are less well understood. Based on a recently implemented epilepsy ePortal, this research project will examine: what people with epilepsy (PWE) in Ireland value about the ePortal; the viewpoint of patients, their families and healthcare workers regarding the impact of the technology on epilepsy care; how the ePortal can help as PWE move from one healthcare provider to another. While this project will focus on epilepsy care, the learning from it can be used to enhance healthcare services for other complex chronic health conditions.

Award Date
20 April 2018
Award Value
Principal Investigator
Ms Mary Fitzsimons
Host Institution
Royal College of Surgeons in Ireland
Applied Partnership Awards