A polytopic approach to democratising decision-making on health data reuse in the European Union

Paper by Anna Colom and Marta Poblet: “In our digital world, reusing data to inform: decisions, advance science, and improve people’s lives should be easier than ever. However, the reuse of data remains limited, complex, and challenging. Some of this complexity requires rethinking consent and public participation processes about it. First, to ensure the legitimacy of uses, including normative aspects like agency and data sovereignty. Second, to enhance data quality and mitigate risks, especially since data are proxies that can misrepresent realities or be oblivious to the original context or use purpose. Third, because data, both as a good and infrastructure, are the building blocks of both technologies and knowledge of public interest that can help societies work towards the well-being of their people and the environment. Using the case study of the European Health Data Space, we propose a multidimensional, polytopic framework with multiple intersections to democratising decision-making and improving the way in which meaningful participation and consent processes are conducted at various levels and from the point of view of institutions, regulations, and practices…(More)”.