Haemophilia Lighthouse Project


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 National Haemophilia service undertook a detailed review of the current service and identified opportunities for improvement and this lead to creation of the Haemophilia Lighthouse Project.  The key components of the project are:

  • A patient portal to radically improve self management (on line choose and book, access to electronic record, advanced educational modules, ability for patients to report outcome measures)
  • Deployment of full paperless EPR including diagnostic coding, medication management, clinical notes, order sets, integrated electronic care pathways, real time performance reports, provider approval and reminders.  This EPR will be accessible in all haemophilia treatment centres, nationally and at home by Health Care professionals.  This system will link to local hospitals PAS/LIS and also the National MedLIS solution.
  • The project also includes 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.


Key milestones have been reached in the Haemophilia Lighthouse Project. A detailed current state review of all sites has now been completed with its findings integrated into the new platform to enable end users to have a seamless transition from current practices to new future practices whilst maintaining and improving on care delivery.

A complex data migration process is currently underway, this will ensure that the integrity of the patients existing data can be populated in the new platform to support the continuity of care.

Implementation is ongoing with user training and go-live is scheduled for Q1 2018.