European Health Data Space: BDVA presents its position paper

19/07/23

The European Health Data Space is meant to improve research and innovation in the health domain, whilst guaranteeing personal health data protection. Supporting this initiative, BDVA proposes in this position paper improvements for the further legisl...

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The European Health Data Space is meant to improve research and innovation in the health domain, whilst guaranteeing personal health data protection.

Supporting this initiative, BDVA proposes in this position paper improvements for the further legislative steps of this regulation.

Most importantly, the association seeks to shed the light on the issues related to opt-in and opt-out for the secondary use of healthcare data of patients.

BDVA advises against any opt-in or opt-out mechanisms. We support instead the development of robust transparency and reporting requirements for data users. Creating barriers to share data on the subjects side, would provoke data and algorithmic bias leading to unreliable research results. Moreover, BDVA proposes eventually to clarify the definition and delineation of different purposes for secondary use are provided.

The paper then continues with suggestions regarding innovation supporting the regulatory environment, legal interoperability as well as clearer terminology regarding privacy preserving technologies and techniques.

The paper has been co-authored by members of BDVA, experts in healthcare research and innovation, policy and data spaces.