Doing co-creation: power and critique in the development of a European health data infrastructure

Abstract

This paper engages with the translation of the abstract concept of Responsible Research and Innovation (RRI) into practice. Our investigation is situated within a large-scale European project seeking to develop a citizen-centered digital health data platform. We specifically engage with co-creation practices and their potential for creating and maintaining inclusive environments generative of critique and empowerment. Critique for us means questioning practices and the modes of thought they rest on, both of ourselves and participants in the co-creation process. We combine a narrative analysis of EU funding calls framing the project with a reflection on our experiences as STS scholars during the co-creation process and on how citizens formulated their critique regarding the health data infrastructure. We end discussing the possibilities and limits of such a co-creation approach and the spaces and modes of critique made possible and, thus, how it lives up to the promises of responsible innovation.