DATAGov - Public and patient involvement in health data governance: a people-centred approach to data protection in genetic diseases

Summary:

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 identify people’s preferences regarding participation in decisions concerned with data collection, sharing and protection and secondary data use, 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.

Funding approved by the Competitiveness and Internationalization Operational Program in its ERDF component, by the Foundation for Science and Technology, I.P.