Factors that influence data sharing through data sharing platforms: A qualitative study on the views and experiences of cohort holders and platform developers.

• Main Authors: Thijs Devriendt, Pascal Borry, Mahsa Shabani
• Format: Article
• Language: English
• Published: Public Library of Science (PLoS) 2021-01-01
• Series: PLoS ONE
• Online Access: https://doi.org/10.1371/journal.pone.0254202

<h4>Background</h4>Infrastructures are being developed to enhance and facilitate the sharing of cohort data internationally. However, empirical studies show that many barriers impede sharing data broadly.<h4>Purpose</h4>Therefore, our aim is to describe the barriers and concerns for the sharing of cohort data, and the implications for data sharing platforms.<h4>Methods</h4>Seventeen 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.<h4>Results</h4>Credit 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.<h4>Conclusions</h4>Data 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.