The digital health landscape in Uganda is plagued by problems with interoperability and sustainability, due to fragmentation and a lack of integrated digital health solutions. This can be partly attributed to the absence of policies on the interoperability of data, as well as the fact that there is no common goal to make digital data and data infrastructure interoperable across the data ecosystem. The promulgation of the FAIR Guidelines in 2016 brought together various data stewards and stakeholders to adopt a common vision on data management and enable greater interoperability. This article explores the potential of enhancing digital health interoperability through FAIR by analysing the digital solutions piloted in Uganda and their sustainability. It looks at the factors that are currently hindering interoperability by examining existing digital health solutions in Uganda, such as the Digital Health Atlas Uganda (DHA-U) and Uganda Digital Health Dashboard (UDHD). The level of FAIRness of the two dashboards was determined using the FAIR Evaluation Services tool. Analysis was also carried out to discover the level of FAIRness of the digital health solutions within the dashboards and the most frequently used software applications and data standards by the different digital health interventions in Uganda.

Rapid and effective data sharing is necessary to control disease outbreaks, such as the current coronavirus pandemic. Despite the existence of data sharing agreements, data silos, lack of interoperable data infrastructures, and different institutional jurisdictions hinder data sharing and accessibility. To overcome these challenges, the Virus Outbreak Data Network (VODAN)-Africa initiative is championing an approach in which data never leaves the institution where it was generated, but, instead, algorithms can visit the data and query multiple datasets in an automated way. To make this possible, FAIR Data Points—distributed data repositories that host machine-actionable data and metadata that adhere to the FAIR Guidelines (that data should be Findable, Accessible, Interoperable and Reusable)—have been deployed in participating institutions using a dockerised bundle of tools called VODAN in a Box (ViB). ViB is a set of multiple FAIR-enabling and open-source services with a single goal: to support the gathering of World Health Organization (WHO) electronic case report forms (eCRFs) as FAIR data in a machine-actionable way, but without exposing or transferring the data outside the facility. Following the execution of a proof of concept, ViB was deployed in Uganda and Leiden University. The proof of concept generated a first query which was implemented across two continents. A SWOT (strengths, weaknesses, opportunities and threats) analysis of the architecture was carried out and established the changes needed for specifications and requirements for the future development of the solution.

With the prevailing COVID-19 pandemic, the lack of digitally-recorded and connected health data poses a challenge for analysing the situation. Virus outbreaks, such as the current pandemic, allow for the optimisation and reuse of data, which can be beneficial in managing future outbreaks. However, there is a general lack of knowledge about the actual flow of information in health facilities, which is also the case in Uganda. In Uganda, where this case study was conducted, there is no comprehensive knowledge about what type of data is collected or how it is collected along the journey of a patient through a health facility. This study investigates information flows of clinical patient data in health facilities in Uganda. The study found that almost all health facilities in Uganda store patient information in paper files on shelves. Hospitals in Uganda are provided with paper tools, such as reporting forms, registers and manuals, in which district data is collected as aggregate data and submitted in the form of digital reports to the Ministry of Health Resource Center. These reporting forms are not digitised and, thus, not machine-actionable. Hence, it is not easy for health facilities, researchers, and others to find and access patient and research data. It is also not easy to reuse and connect this data with other digital health data worldwide, leading to the incorrect conclusion that there is less health data in Uganda. The a FAIR architecture has the potential to solve such problems and facilitate the transition from paper to digital records in the Uganda health system.