The problem

A person with epilepsy may need medical attention quickly. But what if their data are not at that clinic or hospital? PiSCES is an online portal that allows people with epilepsy to access their own data and share it with healthcare professionals. This project sought to discover whether using PiSCES improves the experience and care of the patient.

The project

Teams in RCSI University of Medicine and Health Sciences and TCD at the FutureNeuro Research Centre worked with 72 individuals with a clinical diagnosis of epilepsy whose medical information is on the PiSCES portal and 18 care partners of people with epilepsy. The researchers asked how they and healthcare professionals felt about how the portal might enhance or inhibit the epilepsy care process.

The outcomes

  • Patients, carers, and healthcare professionals are generally positive about an online portal where people with epilepsy can access and share their own health data, believing it can foster inclusion, confidence, and trust
  • Patients and their carers felt empowered by having access to their own data, and it helped them to recall previous episodes and to understand epilepsy better
  • Some healthcare professionals had concerns about how work practices may need to change when patients use the portal to share data in the clinic.

Professor Colin Doherty, Consultant Neurologist and Head of TCD School of Medicine, says:

“For a person with epilepsy, an electronic portal where they can access their own relevant data immediately and share it with healthcare professionals has the potential to transform care. But we wanted to know how patients and carers and healthcare professionals would feel about it. Overall, the results show that the electronic portal brings the potential for patients to feel empowered, and to understand their conditions more deeply.”

“Portal power to the patients – the value of accessing your epilepsy data online” is part of a wider collection of success stories across four themes from this year’s annual Health Research in Action. Dowload a full copy of Health Reaseach in Action.