National Haemophilia Clinical Information System in Ireland Dr

National Haemophilia Clinical Information System in Ireland Dr Barry White Consultant Haematologist National Centre for Hereditary Coagulation Disorders, St James’s Hospital and Trinity College Dublin, Ireland

Agenda Background to haemophilia care in Ireland n Current IT solutions n Requirements n

Haemophilia Care in Ireland n 3 Comprehensive Care Centres n Dublin n Adult n Dublin n Paediatric n Cork n Adult and Paediatric

Haemophilia Care in Ireland n 545 People with Haemophilia n 360 Haemophilia A (182 severe) n 185 Haemophilia B (52 severe) n 555 von Willebrands n 285 Rare Bleeding Disorders Prophylaxis for all Children (1990 s) and suitable adults n Recombinant FVIII, FIX used for all n

Key objectives from IT system Information at point of care (including remote care) n Decision support (at point of care including at home) n Ability to measure performance n Ability to recall n

The solutions Encrypted Messaging Unique GS 1 barcoding validation Electronic Patient record Comprehensive integrated care Home/Hospital tracking Validated cold chain delivery

Measurement supports operations n % DNA Rate

Smart phones with scanning App

How it works The system is designed to be simple to use but comprehensive – designed in consultation with patient focus group

Key requirements EMR for haemophilia n Integration (within haemophilia, between haemophilia and enterpises, between haemophilia and GP) n Data repository and analytics n Decision support on haemophilia and aging n Patient portal (education and clinical record with decision support) n