The Development of an Epilepsy Electronic Patient Portal: Facilitating both patient empowerment and remote clinician‐patient interaction in a post COVID‐19 world

Power, Kevin; McCrea, Zita; White, Maire; Breen, Annette; Dunleavy, Brendan; O’Donoghue, Sean; Jacquemard, Tim; Lambert, Veronica; El‐Naggar, Hany; Delanty, Norman; Doherty, Colin; Fitzsimons, Mary

OBJECTIVES: The current COVID‐19 pandemic stresses an urgency to accelerate much needed health service reform. Rapid and courageous changes being made to address its immediate impact are demonstrating that the means and technology to enable new models of healthcare exist. For example, innovations such as electronic patient portals (ePortal) can facilitate: a) radical reform of out‐patient care; b) cost containment in the economically constrained aftermath of the pandemic; c) environmental sustainability by reduction of unnecessary journeys/transport. Herein the development of PiSCES, an ePortal to the Irish National Epilepsy Electronic Patient Record, is demonstrated. This project, which pre‐dates the COVID‐19 crisis, aims to facilitate better patient‐ and family‐centred epilepsy care. METHODS: A combination of ethnographic research, document analysis and joint application design sessions was used to elicit PiSCES requirements. From these, a specification of desired modules of functionality was established and guided the software development. RESULTS: PiSCES functional features include “My Epilepsy Care Summary”, “My Epilepsy Care Goals”, “My Epilepsy Clinic Letters”, “Help Us Measure Your Progress”, “Prepare For Your Clinic Visit”, “Information for Your Healthcare Provider”. The system provides people with epilepsy access to, and engages them as co‐authors of, their own medical record. It can promote improved patient‐clinician partnerships and facilitate patient self‐management. SIGNIFICANCE: In the aftermath of COVID‐19, it is highly unlikely that the healthcare sector will return to a “business as usual” way of delivering services. The pandemic is expected to accelerate adoption of innovations like PiSCES. It is therefore a catalyst for change that will deliver care that is more responsive to individual patient needs and preferences.