Pilot study of an Internet-based electronic patient treatment record and communication system for haemophilia,...

Communication between patients and haemophilia centres is important in the management of the disease. Traditionally this has been done by paper records which give retrospective and often incomplete data. This paper describes the development and pilot study of a novel Internet-based electronic patient treatment log. The advantages of the system include up to date information available to the haemophilia centre, less data entry, better quality records and an individualized alert system for significant events. The system was tested with ten patients at three UK haemophilia centres and found to be feasible and easy to use. In the opinion of the patients and health care professionals involved in the pilot study, the system improves quality, accuracy, accessibility and usefulness of patient generated data. Development of the system is ongoing and its use extended to other haemophilia centres.