Designing and Creating Personal Electronic Health Records for Thalassemia Major Patients

Thalassemia is a chronic disease which is extremely expensive, complex and debilitating. The management skill of thalassemia patients should be enhanced to minimize the risk of disease complications. The main purpose of this study was to develop personal electronic health records for thalassemia major patients.
This is a developmental applied study which was conducted to develop a personal electronic health record for thalassemia major. First, a questionnaire was prepared to determine the data elements and was filled by Hematology and Oncology professionals in the country (110 persons). Then, based on the results of needs analysis, the system was designed using PHP programming language and MySQL database and was evaluated by 50 thalassemia patients who referred to the Thalassemia Clinic of Bu Ali Sina Hospital of Mazandaran University of Medical of Sciences during the second half of the month of Aban. Finally, a standard questionnaire of usability and user satisfaction assessment was distributed among them.
Usability evaluation of the system showed that patients evaluated the system at a good level with a mean rating of 7.91 (out of 9 points).
The web-based systems can be used to help thalassemia patients to control injection and reduce the complications of the disease and to promote health.