10.B. Scientific session: The European Health Data Space (EHDS): A sea of change for health data in Europe

Abstract A wealth of data is generated every day throughout our health systems which, if leveraged well, can underpin the digital solutions and policies that will transform health and care. However, the complexity and divergence of rules, structures and processes within and across European Member States make it difficult to fully harness that potential at European scale. The European Health Data Space will address this challenge by empowering Europeans to access and control their health data and by offering a harmonised and simplified framework for the reuse of health data, including for research, innovation, and policymaking purposes. During the workshop, we will present an overview of the European Health Data Space framework and its implementation phases and discuss its benefits for targeted stakeholders, including citizens, researchers and policymakers in public health. Objectives 1. Emphasise the importance of leveraging health data for research, innovation and policymaking; 2. Present the European Health Data Space regulation and what actions are being undertaken to prepare for its implementation; 3. Discuss how access to their health data can enable patients and individuals play an active role in their own health journey; 4. Discuss what will be the main benefits for policymakers and researchers in public health resulting from enhanced access to health data. Introduction by Chair for presenting the European Health Data Space and the setting the scene for the session. Short presentations by speakers: 1. Implementing the EHDS: lessons from the EHDS2 pilot - Marianne Benderra, Health Data Hub, presenting his experience on developing and piloting the EHDS infrastructure for secondary use of health data, highlighting key project developments; 2. How can the EHDS enable participatory healthcare? - Henrique Martins, ISCTE, xShare project on how the xShare “Yellow Button” will empower individuals with access to and control over their health data and may foster the development of knowledge and tools necessary for prevention and management of their health; 3. What will the EHDS enable for research and policymaking? - Nienke Schutte, Scienciano, bringing the perspective of a leading European public health institute how the benefits the EHDS framework can bring for policymaking, research and innovation. 15 min Q&A session, taking questions from the audience, possibly also through Slido. Possible guiding questions: How can stakeholders contribute more broadly to the development of the EHDS? What support is needed to ensure that data users and data holders are prepared when the EHDS framework becomes operational? Conclusions 2 min by Chair. Speakers/Panelists Marianne Benderra French Health Data Hub, Paris, France Henrique Manuel Martins ISCTE, Lisbon, Portugal Nienke Schutte Sciensano, Brussels, Belgium

Publication Details

Journal
European Journal of Public Health
Published
2024-10-28
DOI
https://doi.org/10.1093/eurpub/ckae144.623
Primary Topic
Chronic Disease Management Strategies
Type
article
Field-Weighted Citation Impact
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article

10.B. Scientific session: The European Health Data Space (EHDS): A sea of change for health data in Europe

European Journal of Public Health
Chronic Disease Management Strategies
article

10.B. Scientific session: The European Health Data Space (EHDS): A sea of change for health data in Europe

article en

Abstract

Abstract A wealth of data is generated every day throughout our health systems which, if leveraged well, can underpin the digital solutions and policies that will transform health and care. However, the complexity and divergence of rules, structures and processes within and across European Member States make it difficult to fully harness that potential at European scale. The European Health Data Space will address this challenge by empowering Europeans to access and control their health data and by offering a harmonised and simplified framework for the reuse of health data, including for research, innovation, and policymaking purposes. During the workshop, we will present an overview of the European Health Data Space framework and its implementation phases and discuss its benefits for targeted stakeholders, including citizens, researchers and policymakers in public health. Objectives 1. Emphasise the importance of leveraging health data for research, innovation and policymaking; 2. Present the European Health Data Space regulation and what actions are being undertaken to prepare for its implementation; 3. Discuss how access to their health data can enable patients and individuals play an active role in their own health journey; 4. Discuss what will be the main benefits for policymakers and researchers in public health resulting from enhanced access to health data. Introduction by Chair for presenting the European Health Data Space and the setting the scene for the session. Short presentations by speakers: 1. Implementing the EHDS: lessons from the EHDS2 pilot - Marianne Benderra, Health Data Hub, presenting his experience on developing and piloting the EHDS infrastructure for secondary use of health data, highlighting key project developments; 2. How can the EHDS enable participatory healthcare? - Henrique Martins, ISCTE, xShare project on how the xShare “Yellow Button” will empower individuals with access to and control over their health data and may foster the development of knowledge and tools necessary for prevention and management of their health; 3. What will the EHDS enable for research and policymaking? - Nienke Schutte, Scienciano, bringing the perspective of a leading European public health institute how the benefits the EHDS framework can bring for policymaking, research and innovation. 15 min Q&A session, taking questions from the audience, possibly also through Slido. Possible guiding questions: How can stakeholders contribute more broadly to the development of the EHDS? What support is needed to ensure that data users and data holders are prepared when the EHDS framework becomes operational? Conclusions 2 min by Chair. Speakers/Panelists Marianne Benderra French Health Data Hub, Paris, France Henrique Manuel Martins ISCTE, Lisbon, Portugal Nienke Schutte Sciensano, Brussels, Belgium

European Journal of Public HealthVol. 34(Supplement_3)
Industry, innovation and infrastructure
Openalex Percentile: Top 71%
Chronic Disease Management Strategies
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