DATAGov aims to promote the co-production of a model for public and patient involvement in health data governance. Using a mixed methods research approach, the project will examine people’s expectations, needs and preferences regarding participation in decisions concerned with data use, sharing and protection, and provide an understanding of the reasons underlying them. This will form a stepping-stone to engage lay people and professional experts from two reference centres for rare diseases in a dialogue about the benefits and risks of public and patient involvement in data governance, as well as in devising social innovations to address emerging ethical, legal and social challenges linked to participation.