Haemophilia Lighthouse Project

StJamesHospitalChildrensHospitalCrumlinCorkUniversityHospitalHSE

This project is being delivered by eHealth Ireland which is part of the HSE, in collaboration with St James's Hospital, Our Lady’s Hospital, Crumlin and Cork University Hospital.

Haemophilia is an inherited disease caused by the lack of a specific clotting factor in blood which leads to significant and sometimes life-threatening bleeding. Intravenous infusion of the missing clotting factor is used to treat and prevent bleeds.

World wide more than 305,000 people have Haemophilia. In over 70% of cases there is a family history. The Heamophilia Project will work with this community in Ireland to further develop an EHR that will fulfil the dual role of a national registry accessible by all treatment centres and also provide a means for each treatment centre to manage their patient files electronically.

A Patient Mobile Application will allow smartphone barcode scanning App for patients to use in their own home to ensure their medication is safe to take, record their medication usage and incidents this will improve patient safety and outcomes. The integration into the hospital PAS and development of a secure clinical communicator will enable clinicians to review the patient’s progress and advise on their medicinal usage.

The data collected can be used to inform not just individual patient safety but on population as a whole, this has not previously been available to healthcare providers involved in the delivery of clinical services to this patient population. The project will be run on an open source platform to enable others to use the code to develop and improve on the haemophilia platform being built.