The dynamic functions of values in RI-informed activities: anticipating the development of a data ecosystem for rare cancers

Abstract

Great expectations and concerns surround health data ecosystems, yet empirical research on their impacts is only beginning to emerge. Building on Responsible Innovation (RI) and valuation studies, we ask: what functions are values made to fulfill in anticipatory practices shaping the development of a health data ecosystem, and with what implications? We examine IDEA4RC, a Horizon Europe-funded project developing a rare cancer data ecosystem, where we deployed a co-creation framework. We thematically analyzed data from interviews, a co-creation workshop, participant observations, surveys, and documents. We show that, in early development, values were mobilized in three interconnected ways: as requirements that narrowed and legitimized developmental pathways; as guides that broadened anticipated impacts; and as mediators sustaining multi-stakeholder collaboration. We thus demonstrate how values dynamically shape anticipatory practices and transform rapidly over short timeframes, while extending RI to the ecosystem level by highlighting how power and authority influence values' articulation and mobilization.