ehds
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Position paper on EHDS opt-out
Recommendations from the viewpoint of patient advocates and patient representatives The BBMRI-ERIC Stakeholder Forum – Patients and Citizens Pillar in collaboration with the BBMRI-ERIC team have published a position paper to provide recommendations on the implementation of the opt-out process/mechanism for secondary use under European Health Data Space (EHDS) regulation. EHDS regulation guarantees citizens the…
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New era for health data: Secondary use of data in the EHDS and DGA and its implementation in Europe and Austria
BBMRI.at in collaboration with the projects Smart-FOX and CD-Laboratory for Machine Learning Driven Precision Imaging is honored to invite to an exclusive forum, “A New Era for Health Data: Secondary Use of Data in the EHDS and DGA and Its Implementation in Europe and Austria”. Secondary use of health data The processing and sharing of…
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The draft text of the European Health Data Space (EHDS) in trilogues sparks deep concerns in the European healthcare ecosystem
BBMRI-ERIC, as part of a coalition of 35 large health stakeholder organisations representing patients, health professionals, researchers and industrial actors in the healthcare ecosystem at both European Union (EU) and Member State level, is expressing its shared concerns about the latest negotiations on the proposed Regulation on the European Health Data Space (EHDS). The EHDS is currently being negotiated at speed by EU institutions to get…
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Stakeholder coalition calls for legislative refinement of the EHDS
4 December 2023, Brussels – BBMRI-ERIC, as part of a large multi-stakeholder group, representing the entire spectrum of the healthcare ecosystem and consisting of 36 European patient organisations, medical associations, health research infrastructures and health industry associations, have issued a joint statement to alarm bells about the significant legislative shortcomings and uncertainties in the proposed…
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EHDS stakeholders meet with EU officials
This article is 287 words and is an approximate two minute read. 6 September 2023, Brussels – BBMRI-ERIC, as part of a multi-stakeholder group consisting of 32 European patient organisations, medical associations, research organisations, data collaborations and industry associations met EU officials, including MEP Tomislav Sokol, Co-Rapporteur, as well as several permanent representations that will hold…
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BBMRI-ERIC and the Stakeholder Forum Patient Pillar release co-written statement in support of EHDS opt-out meeting
This article is 1745 words and is an approximate ten minute read. The following statement, co-written by BBMRI-ERIC and the Stakeholder Forum Patient Pillar, has been made in support of the EHDS opt-out meeting that happened on 6 September 2023. Details can be found here. The purpose of this statement is to highlight the risks and…
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Joint Statement: Health organisations define EHDS’ opt out required for life saving research
On 6 June, BBMRI-ERIC joins together with 31 other health stakeholders to share views on specific recommendations for a potential opt-out mechanism in the future EHDS. These organisations and initiatives have joined forces because they all share the view that health data is precious and a renewable resource that can power decision-making for clinical care,…
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EHDS2 Pilot – A European Consortium Pilot project, candidate for the future European Health Data Space
The EHDS2 Pilot consortium aims to be selected to build and test a first version of the European Health Data Space for the secondary use of health data. Sharing data at European scale is fundamental to develop research and improve citizens’ health. It allows, for example, to build more efficient artificial intelligence algorithms for research, to improve…