Paper short abstract:

This paper argues that the development of a rare cancers RI requires the emergence of ‘trading zones’ where various professional users engage. It highlights the substantial moral labor underlying the development of shared goals and how valuation practices contribute to the redistribution of power.

Paper long abstract:

The development of research infrastructures (RI) in healthcare is being encouraged through a nexus of technological advancements, investments through large European Union (EU) funding schemes, and (upcoming) changes in EU policies and regulations meant to facilitate the collection, integration, and (re-)use of health data, such as the European Health Data Space proposal. This paper zooms in on IDEA4RC, a Horizon Europe-funded project focusing on the development of a rare cancers RI and involving professional users of substantially different backgrounds: medical researchers, digital technology developers, data managers, legal experts. We were tasked to deploy a Responsible Research and Innovation framework within IDEA4RC, which allowed us to collect data in the RIs’ early development stages using different approaches: two co-creation workshops, 31 interviews, and participant observation of online and offline project meetings. The findings developed through thematic data analysis suggest that the development of this RI requires the emergence of ‘trading zones’ where the various users engage. We find that not only changes in the types of knowledge and expertise of the different types of professionals involved are required, but also the reconfiguration and alignment of values central to each community of professional users. Whereas previous studies have focused on the epistemic practices and negotiations required for ‘trading zones’ (Galison, 1999; Gorman, 2009; Collins et al, 2007) to emerge, we highlight the substantial moral labor underlying the development of shared goals and show how complex valuation practices contribute the redistribution of power and influence between the medical researchers and technical developers involved.