Accepted for/Published in: JMIR Research Protocols
Date Submitted: Sep 11, 2020
Date Accepted: Dec 8, 2020
Warning: This is an author submission that is not peer-reviewed or edited. Preprints - unless they show as "accepted" - should not be relied on to guide clinical practice or health-related behavior and should not be reported in news media as established information.
Initiatives, concepts and implementation practices of FAIR Data Principles in health data stewardship practice: Scoping review protocol
ABSTRACT
Background:
Data stewardship is an essential driver for 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 guiding principles for research data management have been resonating in scientific communities. Enabling data to be findable, accessible, interoperable and reusable is today believed to strengthen data sharing and to reduce duplicated efforts towards harmonisation of data from heterogeneous unconnected data silos. FAIR initiatives and implementation trends are rising in different facets of scientific domains. Comprehensive information about the concept and implementation practices of the FAIR data principles applied to health data is important to understand from flourishing initiatives and implementation lessons relevant to improved health research.
Objective:
To conduct a scoping review in order 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 review 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 three 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 pre-tested 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 from the contents in the included papers.
Results:
The results will be reported using the PRISMA scoping review reporting guidelines. We anticipate finalising the manuscript for this work in 2021.
Conclusions:
We believe comprehensive information about the FAIR data principles, initiatives, implementation practices, and lessons learnt in the FAIRification process in the health domain is paramount to support both evidence-based clinical practice and research transparency in the era of big data and open research publishing.
Citation
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Copyright
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