Safe treatment for haemophilia patients revolutionised

Feargal McGroarty
Feargal McGroarty

A new national digital project introduced in St. James’s Hospital had revolutionised the safe treatment of patients with haemophilia, Mr. Feargal McGroarty, National Haemophilia System Project Manager, St. James’s told the meeting.

The catalyst for the new process was the crisis which occurred between the late 1970s and 1985, when a number of haemophilia patients were infected with Hepatitis C and HIV through contamination of the blood clotting factor used to treat their disease.

He said haemophilia was a hereditary bleeding disorder caused by a deficiency of a protein called a clotting factor. It was characterised by excessive bleeding, even after minor injury.
While haemophilia was not a common disease, medication used to treat is was very expensive – in Ireland, it costs approximately €45 million a year for the treatment, 250patients had the severe form of the disease and needed this medication prophylactically (2 -3 times a week).

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Patients with haemophilia were able to self-medicate in their home to help prevent bleeding emergencies. When the crisis occurred in the late 1970s, it was compounded by the fact that infected products remained in the supply chain after recall, leading to subsequent infection. Over 100 patients suffering from haemophilia died.

Following the report of the Government appointed Lindsay Tribunal into the haemophilia crisis, the overriding requirement was that the service should be patient centred and blood products supplied to persons with haemophilia should be of the highest standard and of the safest nature that was available.

To achieve this, it was necessary to redesign the care delivery service, which involved a number of strands:

  • Implement a mediation track and trace system based on global (GS1) standards. This ensured each dose of medication had a unique identifier (in a datamatrix barcode) which would enable it to be tracked and traced from the National Coagulation Centre in St. James’s, to any haemophilia treatment centre and to and the patient’s home. This involved labelling each dose of the medication with a barcode containing the product name (GTIN), expiry date, batch/lot number and the unique serial number.
  • Implement a validated cold chain delivery service in order to assure that the medication was delivered to the patient’s home by verified cold chain conditions, and layer the track and trace element described above.

Patient records had also been digitised. A national Electronic Patient Record (EPR) was introduced. Clinicians could now view a record when and where they needed it and records could in the future be used to populate a Patient Portal.

A Smartphone App had also been developed to help patients manage their medication. The patient simply opened the App and scanned the barcode on their medication. The App then performed a number of safety checks including prescription, expiry date and recall. It also alerted the patient to use shorter dated stock, provided recall alerts, timeliness of infusion alerts, automatic medication recording compliance verification and real time alerts for specific bleeds. This had led to improved patient safety and empowerment.

The Cold Chain delivery service ensured all products were delivered in the correct temperature range and mock recall had identified the location of all medication within ten minutes and quantities of alternate stock available.

Mr. Mc Groarty said that as a result of this system, €5 million medication stock had been removed from the supply chain and stock rotation had saved €600,000 worth of stock.
He said he would like to acknowledge the work of all the staff in the National Coagulation Centre, in particular Dr. Barry White, (previous Clinical Director), Evelyn Singleton, National Co-ordinator of CFC, Rachel Bird, National Haemophilia system data manager and Vincent Callan, Director of Facilities Management.