Research data management in health and biomedical citizen science: practices and prospects. Issue 1 (9th December 2019)

• Record Type: Journal Article
• Authors: Borda, Ann; Gray, Kathleen; Fu, Yuqing
• Is Part Of: JAMIA open. Volume 3:Issue 1(2020)
• Page Start: 113
• Page End: 125
• Publication Date: 2019-12-09
• Subjects: citizen science -- crowdsourcing -- participatory health -- self-quantification -- research data management; Medical informatics -- Periodicals; 610.285
• DOI: 10.1093/jamiaopen/ooz052
• Languages: English
• ISSNs: 2574-2531

Abstract

Abstract: Background: Public engagement in health and biomedical research is being influenced by the paradigm of citizen science. However, conventional health and biomedical research relies on sophisticated research data management tools and methods. Considering these, what contribution can citizen science make in this field of research? How can it follow research protocols and produce reliable results? Objective: The aim of this article is to analyze research data management practices in existing biomedical citizen science studies, so as to provide insights for members of the public and of the research community considering this approach to research. Methods: A scoping review was conducted on this topic to determine data management characteristics of health and bio medical citizen science research. From this review and related web searching, we chose five online platforms and a specific research project associated with each, to understand their research data management approaches and enablers. Results: Health and biomedical citizen science platforms and projects are diverse in terms of types of work with data and data management activities that in themselves may have scientific merit. However, consistent approaches in the use of research data management models or practices seem lacking, or at least are not prevalent in the review. Conclusions: There is potential for important data collection and analysis activities to be opaque or irreproducible in health and biomedical citizen science initiatives without the implementation of a research data management model that is transparent and accessible to team members and to external audiences. This situation might be improved with participatory development of standards that can be applied to diverse projects and platforms, across the research data life cycle.