Intelligent ecosystem to improve
the governance, the sharing,

and the re-use of health data for rare cancers


Claudia Egher, researcher at Utrecht University, participated in the annual conference of the European forum for Studies on Policies for Research and Innovation (EUSPRI), hosted by the University of Twente. This year focus was “Governing Technology, Research, and Innovation for Better Worlds”. Egher presented the work done so far within the IDEA4RC project in collaboration with Susan van Hees and and Wouter Boon, also at Utrecht University, in the track “Responsible Futures”.

The talk was based on a paper in course of publication titled “The dynamic functions of values in Responsible Innovation (RI)-informed activities: anticipating the development of a data ecosystem for rare cancers”.


Although great expectations and concerns surround health data ecosystems, research about their impacts is only starting to emerge. In this paper, we build upon insights from Responsible Innovation (RI) and valuation studies to ask: what functions are values made to fulfill in anticipatory practices regarding the development of a health data ecosystem and with what implications? We zoom in on IDEA4RC, a Horizon Europe-funded project aiming to develop a data ecosystem for rare cancers, where we deployed a co-creation framework. We thematically analysed data from interviews, a co-creation workshop, participant observations, surveys, and documents.

Our findings show that in the early stages of this ecosystem’s development, values were mobilised to function as: (1) requirements, helping to narrow down and legitimise certain developmental pathways; (2) guides, opening up and nuancing the impacts considered; (3) mediators, assisting in the maintenance of the collaboration between relevant stakeholders. We contribute to the RI literature by highlighting that values can inform anticipatory practices in highly dynamic and strategic ways and can undergo substantial transformations within short timeframes. We also extend RI’s deployment at the level of ecosystems, where we argue that the power and authority of the stakeholders involved shape how they mobilize values.