European Health Data Space – an opportunity now to grasp the future of data-driven healthcare

Denis Horgan; Marian Hajduch; Marilena Vrana; Jeannette Soderberg; Nigel Hughes; Muhammad Imran Omar; Jonathan A. Lal; Marta Kozaric; Fidelia Cascini; Verena Thaler; Oriol  Solà-Morales; Mario Romao; Frédéric  Destrebecq; Edith Sky  Gross

doi:10.3390/healthcare10091629

European Health Data Space – an opportunity now to grasp the future of data-driven healthcare

Denis Horgan^* (Corresponding Author)
, Marian Hajduch
, Marilena Vrana
, Jeannette Soderberg
, Nigel Hughes
, Muhammad Imran Omar
, Jonathan A. Lal
, Marta Kozaric
, Fidelia Cascini
, Verena Thaler
, Oriol Solà-Morales
, Mario Romao
, Frédéric Destrebecq
, Edith Sky Gross

^*Corresponding author for this work

European Alliance for Personalised Medicine
Palacký University Olomouc
European Heart Network
Juvenile Diabetes Research Foundation
Janssen Pharmaceutica NV
Maastricht University
European Alliance for Personalised Medicine (EAPM)
Catholic University of the Sacred Heart
MedTech Europe
FHiTT-Fundació HiTT
Intel
European Brain Council
EURORDIS-Rare Diseases Europe

Research output: Contribution to journal › Article › peer-review

51 Citations (Scopus)

2 Downloads (Pure)

Abstract

The May 2022 proposal from the European commission for a ‘European health data space’ envisages advantages for health from exploiting the growing mass of health data in Europe. However, key stakeholders have identified aspects that demand clarification to ensure success. Data will need to be freed from traditional silos to flow more easily and to cross artificial borders. Wide engagement will be necessary among healthcare professionals, researchers, and the patients and citizens that stand to gain the most but whose trust must be won if they are to allow use or transfer of their data. This paper aims to alert the wider scientific community to the impact the ongoing discussions among lawmakers will have. Based on the literature and the consensus findings of an expert multistakeholder panel organised by the European Alliance for Personalised Medicine (EAPM) in June 2022, it highlights the key issues at the intersection of science and policy, and the potential implications for health research for years, perhaps decades, to come.

Original language	English
Article number	1629
Number of pages	14
Journal	Healthcare
Volume	10
Issue number	9
Early online date	26 Aug 2022
DOIs	https://doi.org/10.3390/healthcare10091629
Publication status	Published - Sept 2022

Bibliographical note

Denis Horgan developed the concept, orientation, and overall narrative for this manuscript. We would like to thank the members of the European Alliance for Personalised Medicine (EAPM), and the representatives of the European Commission and Member States for their kind input. We would also like to thank Gary Saunders for his kind and valuable contribution. All coauthors of this manuscript participated in roundtables organised by EAPM. We thank them all for their valuable and kind inputs. The organised panel was facilitated by an unrestricted grant of: INTEL, Novartis, and AstraZeneca.

UN SDGs

This output contributes to the following UN Sustainable Development Goals (SDGs)

SDG 3 Good Health and Well-being

Keywords

European
Health
Data
space
healthcare
policy framework
personalised healthcare

Access to Document

10.3390/healthcare10091629Licence: CC BY

Horgan_etal_HC_European_Health_Data_VOR
This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Final published version, 4.89 MBLicence: CC BY

Cite this

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abstract = "The May 2022 proposal from the European commission for a {\textquoteleft}European health data space{\textquoteright} envisages advantages for health from exploiting the growing mass of health data in Europe. However, key stakeholders have identified aspects that demand clarification to ensure success. Data will need to be freed from traditional silos to flow more easily and to cross artificial borders. Wide engagement will be necessary among healthcare professionals, researchers, and the patients and citizens that stand to gain the most but whose trust must be won if they are to allow use or transfer of their data. This paper aims to alert the wider scientific community to the impact the ongoing discussions among lawmakers will have. Based on the literature and the consensus findings of an expert multistakeholder panel organised by the European Alliance for Personalised Medicine (EAPM) in June 2022, it highlights the key issues at the intersection of science and policy, and the potential implications for health research for years, perhaps decades, to come.",

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note = "Denis Horgan developed the concept, orientation, and overall narrative for this manuscript. We would like to thank the members of the European Alliance for Personalised Medicine (EAPM), and the representatives of the European Commission and Member States for their kind input. We would also like to thank Gary Saunders for his kind and valuable contribution. All coauthors of this manuscript participated in roundtables organised by EAPM. We thank them all for their valuable and kind inputs. The organised panel was facilitated by an unrestricted grant of: INTEL, Novartis, and AstraZeneca.",

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European Health Data Space – an opportunity now to grasp the future of data-driven healthcare

Abstract

Bibliographical note

UN SDGs

Keywords

Access to Document

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