DATAGov - Public and patient involvement in health data governance: a people-centred approach to data protection in genetic diseases (POCI-01-0145-FEDER-032194).
Instituto de Saúde Pública da Universidade do Porto (ISPUP/UP) • Epidemiology Research Unit Institute of Public Health, University of Porto (EPIUnit) e Centro Hospitalar São João.
Begin Date: 16th july 2018
End Date: 15th july 2021
Total Budget: 201.316,83€
Budget attributed to ISPUP: 201.316,83€
Principal Investigator: Cláudia de Freitas
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.