by Tarwid J, Childs M, Junod-Moser D, Negrouk A, Egondi T, Tipple C. BMJ Open 2024, 14:e078862. doi: 10.1136/bmjopen-2023-078862
Summary: DNDi is committed to maximising the scientific value of the individual participant data (IPD) it collects, while ensuring participant privacy and transparency in data processing. The authors of this article share what DNDi has learnt while working on its commitment to data sharing and aim to advance the debate about best practice to avoid ‘IPD sharing paralysis’, especially in multistakeholder projects across diverse regulatory environments. A case study outlines the ethical, legal and technical challenges, revealing that each research project presents unique obstacles that delay data sharing and increase costs. The authors conclude that a case-by-case approach is required for each IPD project to balance individual rights, research integrity and the maximum use of IPD for scientific progress.
