Public participation in health data governance: A scoping review

Abstract

The sheer growth of the health data shared and traded globally holds great promise and menace to public health. Big health data can foster scientific advancements with potential to heal millions across the globe. However, inerasable digital footprints left by the use of apps and digital services challenge people’s privacy and autonomy in (un)foreseeable ways that may cause them to stop sharing data. While many argue that public participation in data governance is a right, others view it as a means to increase data subjects’ recruitment and amass large quantities of data. Little systematic knowledge exists, however, about the arguments for and impact of public participation on health data policy and management.