Factors that influence data sharing through data sharing platforms: A qualitative study on the views and experiences of cohort holders and platform developers
Thijs Devriendt, Pascal Borry, Mahsa Shabani
Abstract
BACKGROUND: 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. PURPOSE: Therefore, our aim is to describe the barriers and concerns for the sharing of cohort data, and the implications for data sharing platforms. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.