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.

KEYWORDS:

• Infrastructure
• co-creation
• digital health
• modes of critique
• frictions

Acknowledgements

We would like to thank all our project partners in Smart4Health for their readiness to engage with us all along the project as well as all the citizens and health care professionals offering their time and insights when participating in the co-creation activities. Parts of this paper were also presented at the EASST 2020 and the EASST/4S 2022 which helped sharpen some of our arguments. We would also like to express our appreciation of the comments from two anonymous reviewers who helped us to sharpen some of our arguments.

Disclosure statement

No potential conflict of interest was reported by the author(s).

Notes

1 Two Smart4Health project deliverables offer detailed insights into the social science project framing and the methodological approach: (Felt, Öchsner, and Rae 2019a; 2019b). For insights into the needs and concerns of citizens voiced in the co-creation process: (Felt, Öchsner, and Rae 2022).

2 Participation was voluntary. We obtained informed consent from all participants in the co-creation engagement. All direct references have been anonymised.

3 These codes refer to policy documents listed in temporal order at the end of the paper.

4 EU Parliament, 2015. Silver Economy as Opportunity, 7; EU Commission, 2017. Blueprint Digital Transformation, 8.

Additional information

Funding

This work was supported by Horizon 2020 Framework Programme: [grant number 826117].