The FAIR principles have been widely cited, endorsed and adopted by a broad range of stakeholders since their publication in 2016. By intention, the 15 FAIR guiding principles do not dictate specific technological implementations, but provide guidance for improving Findability, Accessibility, Interoperability and Reusability of digital resources. This has likely contributed to the broad adoption of the FAIR principles, because individual stakeholder communities can implement their own FAIR solutions. However, it has also resulted in inconsistent interpretations that carry the risk of leading to incompatible implementations. Thus, while the FAIR principles are formulated on a high level and may be interpreted and implemented in different ways, for true interoperability we need to support convergence in implementation choices that are widely accessible and (re)-usable. We introduce the concept of FAIR implementation considerations to assist accelerated global participation and convergence towards accessible, robust, widespread and consistent FAIR implementations. Any self-identified stakeholder community may either choose to reuse solutions from existing implementations, or when they spot a gap, accept the challenge to create the needed solution, which, ideally, can be used again by other communities in the future. Here, we provide interpretations and implementation considerations (choices and challenges) for each FAIR principle.
This article explores the global implementation of the FAIR Guiding Principles for scientific management and data stewardship, which provide that data should be findable, accessible, interoperable and reusable. The implementation of these principles is designed to lead to the stewardship of data as FAIR digital objects and the establishment of the Internet of FAIR Data and Services (IFDS). If implementation reaches a tipping point, IFDS has the potential to revolutionize how data is managed by making machine and human readable data discoverable for reuse. Accordingly, this article examines the expansion of the implementation of FAIR Guiding Principles, especially how and in which geographies (locations) and areas (topic domains) implementation is taking place. A literature review of academic articles published between 2016 and 2019 on the use of FAIR Guiding Principles is presented. The investigation also includes an analysis of the domains in the IFDS Implementation Networks (INs). Its uptake has been mainly in the Western hemisphere. The investigation found that implementation of FAIR Guiding Principles has taken firm hold in the domain of bio and natural sciences. To achieve a tipping point for FAIR implementation, it is now time to ensure the inclusion of non-European ascendants and of other scientific domains. Apart from equal opportunity and genuine global partnership issues, a permanent European bias poses challenges with regard to the representativeness and validity of data and could limit the potential of IFDS to reach across continental boundaries. The article concludes that, despite efforts to be inclusive, acceptance of the FAIR Guiding Principles and IFDS in different scientific communities is limited and there is a need to act now to prevent dampening of the momentum in the development and implementation of the IFDS. It is further concluded that policy entrepreneurs and the GO FAIR INs may contribute to making the FAIR Guiding Principles more flexible in including different research epistemologies, especially through its GO CHANGE pillar.
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.
The phenomenon that is coined "Sinai Trafficking" started in 2009 in the Sinai desert. It involves the abduction, extortion, sale, torture, sexual violation and killing of men, women and children. Migrants, of whom the vast majority are from Eritrean descent, are abducted and brought to the Sinai desert, where they are sold and resold, extorted for very high ransoms collected by mobile phone, while being brutally and "functionally" tortured to support the extortion. Many of them die in Sinai. Over the last five years broadcasting stations, human rights organisations and academics have reported on the practices in the Sinai and some of these reports have resulted in some confusion on the modus operandi. Based on empirical research by the authors and the analysis of data gathered in more than 200 recorded interviews with Sinai hostages and survivors on the practices, this article provides a definition of Sinai Trafficking. It argues that the term Sinai Trafficking can be used to differentiate a particular new set of criminal practices that have first been reported in the Sinai Peninsula. The article further examines how the new phenomenon of Sinai Trafficking can be framed into the legal human trafficking definition. The interconnectedness of Sinai Trafficking with slavery, torture, ransom collection, extortion, sexual violence and other severe crimes is presented to substantiate the use of the trafficking framework. The plight of Sinai survivors in Israel and Egypt is explained to illustrate the cyclical process of the trafficking practices especially endured by Eritreans, introduced as the Human Trafficking Cycle. The article concludes by setting out areas for further research.
This article assesses the difference between the concepts of ‘open data’ and ‘FAIR data’ in data management. FAIR data is understood as data that complies with the FAIR Guidelines – data that is Findable, Accessible, Interoperable and Reusable – while open data was born out of awareness of the need to democratise data by improving its accessibility, based on the idea that data should not have limitations that prevent people from using it. This study compared FAIR data with open data by analysing relevant documents using a coding analysis with conceptual labels based on Kingdon's theory of agenda setting. The study found that in relation to FAIR data the problem stream focuses on the complexity of data collected for research, while open data primarily emphasises giving the public access to non-confidential data. In the policy stream, the two concepts share common standpoints in terms of making data available and reusable, although different approaches are adopted in practice to accomplish these goals. In the politics stream, stakeholders with different objectives support FAIR data and from those who support open data.
This article investigates expansion of the Internet of FAIR Data and Services (IFDS) to Africa, through the three GO FAIR pillars: GO CHANGE, GO BUILD and GO TRAIN. Introduction of the IFDS in Africa has a focus on digital health. Two examples of introducing FAIR are compared: a regional initiative for digital health by governments in the East Africa Community (EAC) and an initiative by a local health provider (Solidarmed) in collaboration with Great Zimbabwe University in Zimbabwe. The obstacles to introducing FAIR are identified as underrepresentation of data from Africa in IFDS at this moment, the lack of explicit recognition of situational context of research in FAIR at present and the lack of acceptability of FAIR as a foreign and European invention which affects acceptance. It is envisaged that FAIR has an important contribution to solve fragmentation in digital health in Africa, and that any obstacles concerning African participation, context relevance and acceptance of IFDS need to be removed. This will require involvement of African researchers and ICT-developers so that it is driven by local ownership. Assessment of ecological validity in FAIR principles would ensure that the context specificity of research is reflected in the FAIR principles. This will help enhance the acceptance of the FAIR Guidelines in Africa and will help strengthen digital health research and services.
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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