Mobile Health (mHealth) Palliative Care Surveillance: Pioneering Data-Driven Decision-Making for Palliative Care in Uganda

By Cynthia Kabagambe

The Palliative Care Association of Uganda (PCAU) launched a groundbreaking mobile Health (mHealth) Palliative Care Surveillance program in 2015, initially spanning four health facilities. Utilizing Android smartphones and the Open Data Kit (ODK) application, the initiative aimed to collect aggregated data on palliative care service provision, facilitating informed decision-making, advocacy, research, and policy formulation.

A participant during one of the trainings on using ODK collect application

The success of the pilot led to significant expansion, incorporating six more facilities in 2016 and an additional ten in 2019, totaling 20 facilities across the public and private sectors. Lessons learned during scaling prompted adaptations such as transitioning to devices with larger screens and migrating data to Ona for improved accessibility and management.

A pivotal moment occurred in 2020 when the initiative was presented to the EHealth Technical Working Group of the Ministry of Health, advocating for its integration into the national Health Management Information System (HMIS). By 2023, palliative care HMIS tools and indicators were integrated into the District Health Information System 2 (DHIS2) with support from the Ministry of Health Department of Clinical Services and the Division of Health Information.

Today, these tools are fully integrated into DHIS2 and HMIS, supported by training initiatives spanning across Uganda through regional data champions. This marks a significant step towards data-driven decision-making processes for palliative care in the country. The impact of this initiative has been acknowledged in global publications such as the World Health Organization’s “Assessing the development of palliative care worldwide: a set of actionable indicators” and BMC – Springer Nature’s “Palliative Care in Uganda: Quantitative Descriptive Study of Key Palliative Care Indicators 2018-2020.


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