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The European health data space: Too big to succeed?
In May 2022, the European Commission issued the Proposal for a Regulation on the European Health Data Space (EHDS), with the aims of granting citizens increased access to and control of their (electronic) health data across the EU, and facilitating health data re-use for research, innovation, and po...
Autores principales: | , , , , , , , , , , , , , , , , |
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Formato: | Online Artículo Texto |
Lenguaje: | English |
Publicado: |
Elsevier Scientific Publishers
2023
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Materias: | |
Acceso en línea: | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10448378/ https://www.ncbi.nlm.nih.gov/pubmed/37399677 http://dx.doi.org/10.1016/j.healthpol.2023.104861 |
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author | Marelli, Luca Stevens, Marthe Sharon, Tamar Van Hoyweghen, Ine Boeckhout, Martin Colussi, Ilaria Degelsegger-Márquez, Alexander El-Sayed, Seliem Hoeyer, Klaus van Kessel, Robin Zając, Dorota Krekora Matei, Mihaela Roda, Sara Prainsack, Barbara Schlünder, Irene Shabani, Mahsa Southerington, Tom |
author_facet | Marelli, Luca Stevens, Marthe Sharon, Tamar Van Hoyweghen, Ine Boeckhout, Martin Colussi, Ilaria Degelsegger-Márquez, Alexander El-Sayed, Seliem Hoeyer, Klaus van Kessel, Robin Zając, Dorota Krekora Matei, Mihaela Roda, Sara Prainsack, Barbara Schlünder, Irene Shabani, Mahsa Southerington, Tom |
author_sort | Marelli, Luca |
collection | PubMed |
description | In May 2022, the European Commission issued the Proposal for a Regulation on the European Health Data Space (EHDS), with the aims of granting citizens increased access to and control of their (electronic) health data across the EU, and facilitating health data re-use for research, innovation, and policymaking. As the first in a series of European domain-specific “data spaces”, the EHDS is a high-stakes development that will transform health data governance in the EU region. As an international consortium of experts from health policy, law, ethics and the social sciences, we are concerned that the EHDS Proposal will detract from, rather than lead to the achievement of, its stated aims. We are in no doubt on the benefits of using health data for secondary purposes, and we appreciate attempts to facilitate such uses across borders in a carefully curated manner. Based on the current draft Regulation, however, the EHDS risks undermining rather than enhancing patient control over data; hindering rather than facilitating the work of health professionals and researchers; and eroding rather than increasing the public value generated through health data sharing. Therefore, significant adjustments are needed if the EHDS is to realize its promised benefits. Besides analyzing the implications for key groups and European societies at large who will be affected by the implementation of the EHDS, this contribution advances targeted policy recommendations to address the identified shortcomings of the EHDS Proposal. |
format | Online Article Text |
id | pubmed-10448378 |
institution | National Center for Biotechnology Information |
language | English |
publishDate | 2023 |
publisher | Elsevier Scientific Publishers |
record_format | MEDLINE/PubMed |
spelling | pubmed-104483782023-09-01 The European health data space: Too big to succeed? Marelli, Luca Stevens, Marthe Sharon, Tamar Van Hoyweghen, Ine Boeckhout, Martin Colussi, Ilaria Degelsegger-Márquez, Alexander El-Sayed, Seliem Hoeyer, Klaus van Kessel, Robin Zając, Dorota Krekora Matei, Mihaela Roda, Sara Prainsack, Barbara Schlünder, Irene Shabani, Mahsa Southerington, Tom Health Policy Policy Comment In May 2022, the European Commission issued the Proposal for a Regulation on the European Health Data Space (EHDS), with the aims of granting citizens increased access to and control of their (electronic) health data across the EU, and facilitating health data re-use for research, innovation, and policymaking. As the first in a series of European domain-specific “data spaces”, the EHDS is a high-stakes development that will transform health data governance in the EU region. As an international consortium of experts from health policy, law, ethics and the social sciences, we are concerned that the EHDS Proposal will detract from, rather than lead to the achievement of, its stated aims. We are in no doubt on the benefits of using health data for secondary purposes, and we appreciate attempts to facilitate such uses across borders in a carefully curated manner. Based on the current draft Regulation, however, the EHDS risks undermining rather than enhancing patient control over data; hindering rather than facilitating the work of health professionals and researchers; and eroding rather than increasing the public value generated through health data sharing. Therefore, significant adjustments are needed if the EHDS is to realize its promised benefits. Besides analyzing the implications for key groups and European societies at large who will be affected by the implementation of the EHDS, this contribution advances targeted policy recommendations to address the identified shortcomings of the EHDS Proposal. Elsevier Scientific Publishers 2023-09 /pmc/articles/PMC10448378/ /pubmed/37399677 http://dx.doi.org/10.1016/j.healthpol.2023.104861 Text en © 2023 The Authors. Published by Elsevier B.V. https://creativecommons.org/licenses/by-nc-nd/4.0/This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/). |
spellingShingle | Policy Comment Marelli, Luca Stevens, Marthe Sharon, Tamar Van Hoyweghen, Ine Boeckhout, Martin Colussi, Ilaria Degelsegger-Márquez, Alexander El-Sayed, Seliem Hoeyer, Klaus van Kessel, Robin Zając, Dorota Krekora Matei, Mihaela Roda, Sara Prainsack, Barbara Schlünder, Irene Shabani, Mahsa Southerington, Tom The European health data space: Too big to succeed? |
title | The European health data space: Too big to succeed? |
title_full | The European health data space: Too big to succeed? |
title_fullStr | The European health data space: Too big to succeed? |
title_full_unstemmed | The European health data space: Too big to succeed? |
title_short | The European health data space: Too big to succeed? |
title_sort | european health data space: too big to succeed? |
topic | Policy Comment |
url | https://www.ncbi.nlm.nih.gov/pmc/articles/PMC10448378/ https://www.ncbi.nlm.nih.gov/pubmed/37399677 http://dx.doi.org/10.1016/j.healthpol.2023.104861 |
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