Background Data stewardship is an essential driver of research and clinical practice. Data collection, storage, access, sharing, and analytics are dependent on the proper and consistent use of data management principles among the investigators. Since 2016, the FAIR (findable, accessible, interoperable, and reusable) guiding principles for research data management have been resonating in scientific communities. Enabling data to be findable, accessible, interoperable, and reusable is currently believed to strengthen data sharing, reduce duplicated efforts, and move toward harmonization of data from heterogeneous unconnected data silos. FAIR initiatives and implementation trends are rising in different facets of scientific domains. It is important to understand the concepts and implementation practices of the FAIR data principles as applied to human health data by studying the flourishing initiatives and implementation lessons relevant to improved health research, particularly for data sharing during the coronavirus pandemic. Objective This paper aims to conduct a scoping review to identify concepts, approaches, implementation experiences, and lessons learned in FAIR initiatives in the health data domain. Methods The Arksey and O’Malley stage-based methodological framework for scoping reviews will be used for this review. PubMed, Web of Science, and Google Scholar will be searched to access relevant primary and grey publications. Articles written in English and published from 2014 onwards with FAIR principle concepts or practices in the health domain will be included. Duplication among the 3 data sources will be removed using a reference management software. The articles will then be exported to a systematic review management software. At least two independent authors will review the eligibility of each article based on defined inclusion and exclusion criteria. A pretested charting tool will be used to extract relevant information from the full-text papers. Qualitative thematic synthesis analysis methods will be employed by coding and developing themes. Themes will be derived from the research questions and contents in the included papers. Results The results will be reported using the PRISMA-ScR (Preferred Reporting Items for Systematic Reviews and Meta-analyses Extension for Scoping Reviews) reporting guidelines. We anticipate finalizing the manuscript for this work in 2021. Conclusions We believe comprehensive information about the FAIR data principles, initiatives, implementation practices, and lessons learned in the FAIRification process in the health domain is paramount to supporting both evidence-based clinical practice and research transparency in the era of big data and open research publishing. International Registered Report Identifier (IRRID) PRR1-10.2196/22505
This study explored the regulatory framework in Kenya that may facilitate the implementation of the FAIR Guidelines in health research, as well as the possibility of adopting the FAIR Guidelines at the national level. Fourteen key documents pivotal to the emerging digital health sector in Kenya were identified and analysed using a comprehensive coding and labelling approach based on a binary system for whether or not they mention the FAIR Guidelines or terms and vocabulary related to the FAIR Guidelines. The analysis revealed gaps in data stewardship that could be filled by the implementation of the FAIR Guidelines and, although the documents analysed do not explicitly mention the FAIR Guidelines, FAIR Equivalent terminology and practices are mentioned in varying detail. However, our analysis shows that there are still no provisions for the introduction and implementation of the FAIR Guidelines in health research in Kenya. Therefore, we recommend that the leadership be provided with a comprehensive introduction to the FAIR Guidelines, success stories about the FAIRification of data and research infrastructure in other parts of the world, and a demonstration of the steps needed for the FAIRification of health data in Kenya.
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