Without good metadata, cancer research infrastructures break. That’s why UNCAN-Connect and CANDLE jointly responded to the public consultation on the Implementing Act for Article 77 EHDS Regulation.
As part of the EHDS, health data holders will be required to provide descriptions of their datasets to Health Data Access Bodies (HDABs). As Europe advances towards EHDS implementation, a clear outline of the necessary dataset descriptions is needed. This open consultation sought feedback on the EHDS draft implementing regulation on dataset descriptions.
To prepare our response, we consulted with 27 cancer data actors and consortium members on 30 April. The webinar covered:
- why dataset descriptions matter for UNCAN.eu platform and National Cancer Nodes
- feedback to the suggested metadata elements: property, description, mandatory status
- cross-cutting issues on interaction with HealthDCAT-AP and data user vs data holder perspective
These insights fed into our joint response to the public consulation, which noted several key priorities for the EHDS Dataset Descriptions:
– Providing guidance regarding the information needed in each field
– Clarifying the scope of the elements and statements included
– Suggested edits for several metadata elements
This joint reply reflects the UNCAN-Connect and CANDLE projects’ commitment to the EHDS and striking a balance between FAIRness for data users and ease for data holders.
Read our full response here and find our consultation slide deck on zenodo.
