Implementation of Thalassaemia Health Information System, Provincial Department of Health Services, North-Western Province in collaboration with Ministry of Health - Sri Lanka
Details
Implementing the Thalassaemia Health Information System for the Provincial Thalassaemia Screening Programme. Background: Thalassaemia prevention is hindered by the lack of a centralised digital system, delaying data driven decision making. Previous initiatives were unsustainable due to leadership gaps, administrative barriers, and social stigma.
Paper based records caused inefficiencies, increasing the risk of data loss, errors, and delays in tracking screening data and follow ups. A client friendly digital Health Information System (HIS) is essential for effective screening, monitoring, and prevention. Objectives: To assess public perceptions of digital Thalassaemia screening (DTS) and develop a DHIS2 based HIS to support healthcare providers and policymakers. Methodology: A descriptive cross sectional study evaluated public attitudes towards DTS, while focus group discussions gathered insights from healthcare providers. These findings informed the development of the Thalassaemia Health Information System (THIS) using DHIS2, ensuring it met both client and provider needs. Results: Among adults (A) and children’s parents (B), support for digital data storage was significant (A: 45%, B: 52%), with strong trust in data security (A: 69%, B: 63%). Most preferred screening and counselling at the National Thalassaemia Centre (A: 72%, B: 73%), while 45% of parents opposed disclosing carrier status via coloured cards. THIS has been successfully implemented in the North Western Province and is hosted at the Ministry of Health Data Centre. It enables real time data capture, individual screening tracking, data analytics, and automated reporting. Ongoing user training has received positive feedback, indicating high acceptance and usability. Conclusion & Recommendations: THIS has improved screening workflows, data driven decision making, and programme efficiency. Nationwide implementation will enhance prevention efforts, and THIS can be a model for other screening programmes.