ArticlePloS one2021
Factors that influence data sharing through data sharing platforms: A qualitative study on the views and experiences of cohort holders and platform developers.
Article in PloS one, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 16 papers, 2 of them syntheses that pooled it.
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Who cites it
16 citing papers in PubMed, 2 syntheses or guidelines pooled it.
- The state of data sharing in rheumatology: a systematic review of top journal practices.Rheumatology (Oxford, England) · 2025Pooled it
- Barriers impeding research data sharing on chronic disease prevention among the older adults in low-and middle-income countries: a systematic review.Frontiers in public health · 2024Pooled it
- Article
- Mapping Non-Monetary Values in Data Sharing: Development and Validation of an SSH Framework Across Sectors.Open research Europe · 2026Article
- Unmasking the ethical dimensions of data-sharing in health research: perspectives from researchers at a public university in Uganda.BMC medical ethics · 2025Article
- Building a Foundation for High-Quality Health Data: Multihospital Case Study in Belgium.JMIR medical informatics · 2024Article
- Data as scientific currency: Challenges experienced by researchers with sharing health data in sub-Saharan Africa.PLOS digital health · 2024Article
- Integrating Machine Learning with Multi-Omics Technologies in Geroscience: Towards Personalized Medicine.Journal of personalized medicine · 2024Review
- Article
- Open Data governance at the Canadian Open Neuroscience Platform (CONP): From the Walled Garden to the Arboretum.GigaScience · 2024Article
- Ten simple rules for starting FAIR discussions in your community.PLoS computational biology · 2023Article
- An ethical code for collecting, using and transferring sensitive health data: outcomes of a modified Policy Delphi process in Singapore.BMC medical ethics · 2023Article
- Review
- Article
- Federated Networks for Distributed Analysis of Health Data.Frontiers in public health · 2021Article
- Lessons from federated networks for implementing the European health data space. Empirical study.Digital healthArticle
Corrections and comments
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Authors and funding
3 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
backgroundInfrastructures are being developed to enhance and facilitate the sharing of cohort data internationally. However, empirical studies show that many barriers impede sharing data broadly. PURPOSE: Therefore, our aim is to describe the barriers and concerns for the sharing of cohort data, and the implications for data sharing platforms.
methodsSeventeen participants involved in developing data sharing platforms or tied to cohorts that are to be submitted to platforms were recruited for semi-structured interviews to share views and experiences regarding data sharing.
resultsCredit and recognition, the potential misuse of data, loss of control, lack of resources, socio-cultural factors and ethical and legal barriers are elements that influence decisions on data sharing. Core values underlying these reasons are equality, reciprocity, trust, transparency, gratification and beneficence.
conclusionsData generators might use data sharing platforms primarily for collaborative modes of working and network building. Data generators might be unwilling to contribute and share for non-collaborative work, or if no financial resources are provided for sharing data.
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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.