DATAGov - Public and patient involvement in health data governance: a people-centred approach to data protection in genetic diseases.
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.
With data sharing being increasingly regulated at the supra-national level, it is crucial to understand how local actors’ needs, values and preferences can be embedded into the governance of health data. DATAGov aims to promote a people-centred approach to data protection by enabling the co-production of a model for public and patient involvement in its governance. The project will engage lay 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 protection, and in devising social innovations to address emerging ethical, legal and social challenges, by using a mixed-methods research approach. This project will contribute to address tensions arising in connection to the application of EU data sharing policies at the local level and to imbue health data governance with socio-ethical sensitivity.