The limited volume of COVID‐19 data from Africa raises concerns for global genome research, which requires a diversity of genotypes for accurate disease prediction, including on the provenance of the new SARS‐CoV‐2 mutations. The Virus Outbreak Data Network (VODAN)‐Africa studied the possibility of increasing the production of clinical data, finding concerns about data ownership, and the limited use of health data for quality treatment at point of care. To address this, VODAN Africa developed an architecture to record clinical health data and research data collected on the incidence of COVID‐19, producing these as human‐ and machine‐readable data objects in a distributed architecture of locally governed, linked, human‐ and machine‐readable data. This architecture supports analytics at the point of care and—through data visiting, across facilities—for generic analytics. An algorithm was run across FAIR Data Points to visit the distributed data and produce aggregate findings. The FAIR data architecture is deployed in Uganda, Ethiopia, Liberia, Nigeria, Kenya, Somalia, Tanzania, Zimbabwe, and Tunisia.
This study explores the possibility of opening a policy window for the adoption of the FAIR Guidelines – that data be Findable, Accessible, Interoperable, and Reusable (FAIR) – in Uganda's eHealth sector. Although the FAIR Guidelines were not mentioned in any of the policy documents relevant to Uganda's eHealth sector, the study found that 83% of the documents mentioned FAIR Equivalent efforts, such as the adoption of the National Identification Number (NIN) as a unique identifier in Uganda's national Electronic Health Management Information System (eHMIS) (findability), the planned/ongoing integration of various information systems (interoperability), and the alignment of various projects with international best practices/standards (reusability). A FAIR Equivalency Score (FE-Score), devised in this study as an aggregate score of the mention of the equivalent of FAIR facets in the policy documents, showed that the documents at the core of Uganda's digital health/eHealth policy have the highest score of all the documents analysed, indicating that there is a degree of alignment between Uganda's National eHealth Vision and the FAIR Guidelines. Therefore, it can be concluded that favourable conditions exist for the adoption and implementation of the FAIR Guidelines in Uganda's eHealth sector. Hence, it is recommended that the FAIR community adopt a capacity building strategy through organisations with a worldwide mandate, such as the World Health Organization, to promote the adoption of the FAIR Guidelines as part of international best practices.
The incompleteness of patient health data is a threat to the management of COVID-19 in Africa and globally. This has become particularly clear with the recent emergence of new variants of concern. The Virus Outbreak Data Network (VODAN)-Africa has studied the curation of patient health data in selected African countries and identified that health information flows often do not involve the use of health data at the point of care, which renders data production largely meaningless to those producing it. This modus operandi leads to disfranchisement over the control of health data, which is extracted to be processed elsewhere. In response to this problem, VODAN-Africa studied whether or not a design that makes local ownership and repositing of data central to the data curation process would 2 have a greater chance of being adopted. The design team based their work on the legal requirements of the European Union's General Data Protection Regulation (GDPR); the FAIR Guidelines on curating data as Findable, Accessible (under well-defined conditions), Interoperable and Reusable (FAIR); and national regulations applying in the context where the data is produced. The study concluded that the visiting of data curated as machine actionable and reposited in the locale where the data is produced and renders services has great potential for access to a wider variety of data. A condition of such innovation is that the innovation team is intradisciplinary, involving stakeholders and experts from all of the places where the innovation is designed, and employs a methodology of co-creation and capacity-building.
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