This project looks 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.
Assessing Electronic Data Collection Tools, Pathways and HMIS Integration for Leprosy and LF MMDP Data to Improve Service Delivery
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Project summary
The primary research question asks how electronic data collection tools can be used to support the collection of morbidity management and disability prevention (MMDP) data and the implementation of a comprehensive and integrated morbidity management program for leprosy and lymphatic filariasis (LF) in various countries.
This study will look at the advantages and disadvantages of different data platforms currently being tested or used at the time of the study and makes recommendations about which features are crucial to functionality, usability, and sustainability. The study will also examine the essential morbidity-related data required to manage a comprehensive and integrated MMDP program and advise on how it can be collected, shared, and utilized. These findings address a critical gap related to information for MMDP interventions and could likely be adapted broadly to fit various country contexts.
Currently, very little reliable epidemiological data is available about disability in either leprosy or LF. Most data collected is concerned with only patient estimates so they can be identified for follow-up MMDP services, but little data is collected on the actual provision of those services at the patient-level. For patients needing MMDP services, we often don’t know what degree of disability they have or information on treatment, reactions, or progress. While some data may be available in small project areas, such data are rarely routinely collected, integrated into other data collection tools or databases, and available at the national level, resulting in limitations for national planning and decision making.
With the growth of cost-effective mobile, electronic data collection tools, there is an opportunity to apply these tools to support MMDP, improved care, and more positive patient outcomes. Relevant data could be collected electronically, uploaded to a central database, made available to key stakeholders, and used to support national program planning, service provision and inform training and capacity building. Developing a user-friendly system could allow for regular data collection and updating, and information sharing for all health system levels. Making information accessible to those providing care could be a critical factor for appropriate follow-up, treatment, and care, thus reducing and preventing disability.