1. 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

2. Agenda Background to haemophilia care in Ireland Background to haemophilia care in Ireland Current IT solutions Current IT solutions Requirements Requirements

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

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

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

6. Electronic Patient record Validated cold chain delivery Unique GS1 barcoding Home/Hospital tracking validation The solutions Comprehensive integrated care Encrypted Messaging

11. Measurement supports operations % DNA Rate % DNA Rate

12. Smart phones with scanning App

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

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