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IDEA4RC at EASST4S2024
On July 16th 2024, Claudia Egher, researcher at Utrectht University, presented the work done so far in IDEA4RC together with Susan van Hees and Wouter Boon during the panel “Unexpected ways of knowledge production. Spaces for co-creation in Research Infrastructures” at the quadrennial joint meeting of the European Association for the Study of Science and…
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IDEA4RC at EUSPRI 2024
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…
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Pilot data governance
The deliverable “Pilot Data Governance” details the work done so far by the consortium to identify the legal and ethical requirements needed to deploy the pilot projects across the 11 clinical centers involved in IDEA4RC. Pilot projects are case studies which will serve to test the IDEA4RC ecosystem. They will be selected among the research…
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EU legal landscape on health data sharing and re-use: interview with Vasiliki Tsiompanidou
In the previous months European institutions have added new pieces to the legal landscape of the Union regarding artificial intelligence, data and health data in particular. The EU is doing so to protect basic human rights while at the same time not hampering innovation and favoring data exploitation to improve European citizens’ quality of life.…
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Metadata Taxonomy
This deliverable presents quality metadata and the head and neck cancers common data model that will be adopted within IDEA4RC.
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Data Ecosystem reference architecture
This deliverable is divided in two parts. The first one contains a state-of-the-art analysis of security and privacy requirements for health data sharing and re-use and a corresponding state-of-the-art analysis of technologies and architectural approaches that can satisfy those requirements. The second part focuses on the IDEA4RC ecosystems and outlines the architectural choices that will…
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Ethical data governance
This deliverable offers a first version of the data governance model for the IDEA4RC data ecosystem. It is based on the analysis of the ethical and legal requirements for the secondary use of health data within the European Union, from which a set of guidelines that fulfil the principles of Ethics by Design and by…
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Data ecosystem value analysis and scenarios
This deliverable identifies the values and positions of the IDEA4RC stakeholders at the start of the project and traces the steps to follow their evolution in time. Based on starting values and positions it formulated three possible implementation scenario for IDEA4RC.
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IDEA4RC at the workshop on rare diseases, global health and social sciences
On 11 May 2023, Claudia Egher, social scientist at the University of Utrecht, presented the work she is conducting within IDEA4RC together with Susan van Hees and Wouter Boon at the workshop ‘Rare Diseases, Global Health, and Social Sciences: Counterbalancing Biomedical Reductionism’ organized by the Association for Anthropology and Medicine (AGEM). The workshop ‘Rare Diseases,…
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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…
Intelligent ecosystem to improve
the governance, the sharing,
and the re-use of health data for rare cancers