Participate in the xShare survey!

About xShare:

xShare is a three-year Horizon Europe project envisioning everyone sharing their health data in European Electronic Health Record Exchange Format (EEHRxF), with a click-of-a-button, the xShare Yellow Button, to be featured across health portals and patient apps and allow people to exercise their data portability rights under GDPR. Hence, the European EHRxF will be the driver for research and innovation in the European Health Data Space (EHDS). xShare is a strategic project to prepare the ground for the upcoming EHDS. It aims at creating the necessary conditions for a new dynamic ecosystem which wants to create the necessary bridges between the clinical and public/population health and research domains.

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About the survey:

The objective of the survey for which we ask your contribution is to have a broad and updated overview of public and population health datasets collected in European countries to evaluate their possible connection with the European Electronic Health Record Exchange Format (EEHRxF) referred to on the European Health Data Space Regulation. 6 data domains have been identified in this regulation due to enter into force in 2026.

We particularly wish to have a better understanding of the registries where data are collected continuously and identify the priorities and finalities for new public health data collection. We also wish to document existing best practices to support the "only once" strategy which aims at avoiding duplication of data and improving their quality.

The results of this survey will be used to consolidate use cases associated with the current EEHRxF, consider possible adaptations and identify new information domains of importance for public health. We also want those results to be reused by other major initiatives and we believe that it can also play a role in the drafting of the foreseen implementing acts.

We ambition to have inputs from all European countries. For each country, the datasets already known are already listed and we thus only ask the information not yet available. The information can be provided both by public bodies in charge of data collection or by clinical organisations or professionals which are required to provide the data.

If you believe that you are not the right person to answer one or several questions, we kindly ask you to forward the survey to the person best capable to provide input. It is not compulsory to answer all questions to have your answer validated.

If you have any specific question, feel free to address it to Luc Nicolas at [email protected].

Many thanks for your kind support.

The xShare project Public Health Team