ArticleJAMIA open2020
Research data management in health and biomedical citizen science: practices and prospects.
Article in JAMIA open, 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
9 citing papers in PubMed.
- Article
- Development of a Trusted Third Party at a Large University Hospital: Design and Implementation Study.JMIR medical informatics · 2024Article
- Personal data store ecosystems in health and social care.Frontiers in public health · 2024Article
- Is there a role for citizen science in death and dying research?Frontiers in public health · 2023Article
- Pirate Talk: Navigating Practical, Ethical, and Legal Issues Associated with Biomedical Citizen Science Interview Studies.Citizen science : theory and practice · 2022Article
- Toward a digital citizen lab for capturing data about alternative ways of self-managing chronic pain: An attitudinal user study.Frontiers in rehabilitation sciences · 2022Article
- An Ethics Framework for Evaluating Ownership Practices in Biomedical Citizen Science.Citizen science : theory and practice · 2022Article
- "Idealists and capitalists": ownership attitudes and preferences in genomic citizen science.New genetics and society · 2022Article
- From Commercialization to Accountability: Responsible Health Data Collection, Use, and Disclosure for the 21st Century.Applied clinical informatics · 2020Article
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundPublic 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?
objectiveThe 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.
methodsA 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.
resultsHealth 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.
conclusionsThere 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.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.