EHC 2014 – Driving decision making through data sharing a patients perspective
Haemophilia is a success story. We must show this, and the improvements made through data. This requires active participation of patients, ideally through collaboration with national haemophilia societies to show and share clinic outcomes of data.
Data should look at the entire life of a person with haemophilia using prophylaxis to increase quality of life. So get those treatment records filled in! They really do matter.