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

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.

Déclaration de conflit d'intérêts

All authors are involved in the euCanSHare consortium. In that project, the role of the authors is to (a) study incentives for data sharing and the potential interaction with new technologies; (b) interact directly with individual cohorts to assess their reservations for participating; and (c) organize workshops with experts on broader ELSI topics. Additionally, PB sits on the Governance Advisory Group of the EUCAN-Connect consortium. This does not alter our adherence to PLOS ONE policies on sharing data and materials.