Democratizing epilepsy care: Utility and usability of an electronic patient portal


MaryFitzsimons, KevinPower, ZitaMcCrea, RachelKiersey, MaireWhite, BrendanDunleavy, SeanO’Donoghue, VeronicaLambert, NormanDelanty, Colin P.Doherty


Electronic patient portals (ePortals) can facilitate greater healthcare democratization by providing patients and/or their authorized care partners with secure access to their medical records when and where needed. Such democratization can promote effective healthcare provider–patient partnerships, shared decision-making, and greater patient engagement in managing their health condition. This study examined the usefulness of providing individualized services and care in epilepsy (PiSCES), an epilepsy ePortal, as an enabler of more democratized epilepsy care.

Seventy-two individuals with epilepsy and 18 care partners were invited to report on their experience of interacting via PiSCES with clinical documents (epilepsy care summary record; epilepsy clinic letters) authored about them by healthcare providers. The OpenNotes reporting tool was adapted to capture participant experience.

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