Epilepsy Lighthouse Project
This project is being delivered by eHealth Ireland which is part of the HSE, in collaboration with Royal College of Surgeons in Ireland, Epilepsy Ireland and Beaumont Hospital.
To have epilepsy is to have a tendency to have recurring seizures. Anyone can have a seizure, if the brain is exposed to a strong enough stimulus. We know that about 1 in every 20 people will have a single seizure at some time during their lives. There are ~37,000 people with Epilepsy in Ireland. There are approximately 130 deaths a year related to epilepsy and 90 of these are children.
The Epilepsy Lighthouse project will build upon the success of the epilepsy EPR started in Beaumont Hospital. The project will work with 50 children and 50 adults with Intellectual Disabilities who also have epilepsy to develop a new paradigm of healthcare delivery for Ireland.
Worldwide the instances of misdiagnosis can be as high as 20% in a specialist clinic and between 30-50% in general clinics. In Ireland the in a neurology specialist clinic on can range from 4 weeks to 18 months. Genomic sequencing will allow scientists to analyse the genetic code of epilepsy patients and will be used to enable faster, safer diagnosis and prescription of medicines for treatment. Over €5million is spent a year on trying to find the correct medicines for epilepsy patients. This appears to be the first time that genomic sequencing information will be included in an EPR and opens the door to collaborating internationally on research in this area.
This project will show the move away from the traditional “one size fits all” clinical treatments and instead focus individualized treatments where the patient is at the centre. A Patient Mobile Application has been developed in order for patients to record seizure information, medicinal compliance and quality of life, GP’s will be able to review images. Population health analysis will be conducted on the information gathered to inform future individualized and community care. eHealth Ireland are delighted to have the agreement of the RCSI, Beaumont Hospital and Epilepsy Ireland who will collaborate on this project.