Intelligent ecosystem to improve
the governance, the sharing,

and the re-use of health data for rare cancers

Co-creation workshop: let’s get started

The objective of the first co-creation workshop is to elicit the main values and concerns the IDEA4RC consortium partners experience in regard to the sharing, use, and re-use of data in the context of establishing a data eco-system for rare cancers.

The workshop will take place in Venice at the end of the second consortium meeting (agenda available here) and it will be led by Claudia Egher and Susan van Hees from University of Utrecht and it will be essential for the early stage, pro-active signaling of issues that may potentially impede the successful and widespread implementation of this data ecosystem.

Such early stage anticipation work and inclusion of a variety of perspectives is vital, as it allows the issues identified to be addressed when they are still manageable and when changes to the development and governance of the ecosystem can still be made.

All the participants to the second plenary meeting will take part to the workshop. The organizers are aware that there will be differences among the participants in terms of knowledge and perspectives, but they hope that everyone will feel comfortable enough to actively contribute, either by sharing experiences, expressing concerns, or by asking for questions and clarification from those with technical, medical, or legal expertise.  

Previous work conducted in the field of responsible research and innovation has shown that the successful implementation of innovations depends on how different stakeholders embed it in their daily lives and on the level of acceptance that innovation enjoys among citizens. This is why IDE4RC is striving to collect a broad variety of insights and perspectives, from individuals with different types and levels of knowledge, different interests, values, needs.

You can find here a summary of the workshop and some photos.