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

Principal Investigator:

Ms Mary Fitzsimons, the Royal College of Surgeons in Ireland

Investment:

€259,613 for two years of which, €20,000 is provided by Epilepsy Ireland. The project is funded by the Health Research board under the Applied Partnership Awards 2018.

About the Project:

The aim of the project 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.

Hypothesis:

We propose to explain how ePortals can impact on patient empowerment, the clinician-patient power balance, and coordination and continuity of care.

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).

Methodology:

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.

Significance:

While information on availability and use of ePortals is being reported, to date the impact of this technology on patient outcomes is more limited. Using epilepsy care as a probe, this project will add to the body of knowledge on the role of ePortal technology in accomplishing PFCC in the Irish context.