Project coordination
American Leprosy Missions

Partners
Damien Foundation Belgium
Institute of Tropical Medicine Antwerp

Aim: This project looked at how electronic data collection tools could be used to support the collection of disease data, specifically illness, disability or conditions that result from having the disease.

 Final project title:
Assessing Electronic Data Collection Tools, Pathways and HMIS Integration for Leprosy and LF MMDP Data to Improve Service Delivery

Final project summary:
Effective leprosy care depends on having accurate information about patients, including their disabilities, treatment progress, follow-up care, and any complications they may experience. However, many leprosy programmes face challenges due to incomplete or delayed data, making it difficult to provide comprehensive care and plan services effectively.

This study explored how electronic data collection tools could support Morbidity Management and Disability Prevention (MMDP) services and strengthen leprosy programme management in Ghana.

The research was conducted in three phases. First, researchers reviewed existing literature and surveyed the use of digital data collection tools within the neglected tropical diseases (NTD) sector to understand how similar technologies were being used for leprosy programmes elsewhere. Second, interviews were conducted with key stakeholders involved in leprosy care and data management in Ghana to identify current practices, strengths, and challenges in collecting and managing patient information.

Based on these findings, the research team developed a set of electronic tools to support patient registration, documentation of clinical conditions, district-level data validation, and follow-up assessments. These tools were piloted and implemented in two regions of Ghana, where 52 healthcare workers were trained in digital patient registration and data collection. Information from 91 patients was entered into the system, followed by a review of the pilot's effectiveness.

The introduction of electronic data collection resulted in several important improvements. Healthcare workers were able to capture more complete and accurate clinical information, while the time required to transmit data between health facilities, districts, and the national programme was significantly reduced. The system also improved data security and accessibility, enabling more efficient management of patient information.

The study demonstrated that affordable digital technologies can play a valuable role in strengthening leprosy services. By enabling patient information to be collected electronically, uploaded to centralized databases, and shared across different levels of the health system, digital tools can support better clinical care, programme planning, monitoring, and staff training.

Importantly, improved access to up-to-date patient information can help healthcare workers provide timely follow-up, appropriate treatment, and disability prevention interventions. As a result, electronic data collection systems have the potential to improve patient outcomes, reduce disability, and support more effective and integrated leprosy care programmes.

Overall, the study highlights how user-friendly digital health solutions can strengthen leprosy morbidity management and disability prevention services, providing a practical pathway toward more efficient, data-driven, and patient-centred care in Ghana and similar settings.

Impact

Boateng, S. A., Quao, B. O., Tsikpor, F. S., Odupong, G. N., Awitty, R. M., Mensah, F., ... & Saunderson, P. (2025). Implementation of a digital data management system to support leprosy morbidity management and disability prevention: research findings from Ghana. Leprosy Review, 96(4), 0-0.