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Towards a European Health Data Ecosystem

Published online by Cambridge University Press:  09 October 2020

Nadina IACOB  and
Felice SIMONELLI Open the ORCID record for Felice SIMONELLI [Opens in a new window]
Nadina IACOB
Affiliation:
Researcher, Centre for European Policy Studies (CEPS), Brussels, Belgium; email: [email protected].
Felice SIMONELLI
Affiliation:
Senior Research Fellow, Centre for European Policy Studies (CEPS), Brussels, Belgium; email: [email protected].
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Abstract

The digital health ecosystem is rife with opportunities to improve healthcare through data-driven services in the European Union (EU). The value of health data, in the multiple forms in which they come (from health records to lifestyle data collected by smartphones or wearables), can truly emerge when they are allowed to flow in the ecosystem within a governance framework supported by all relevant stakeholders, with trust as the common and clear thread underpinning it. The coronavirus pandemic has provided an additional impetus for change, showing the importance of coordination and adequate communication between Member States and quality data to inform decision-making. Significant challenges remain, however, in order to achieve a fully integrated European digital health ecosystem, including: (1) the potentially diverging rules set by Member States at the national level and the need for an EU framework for the secondary use of health data; (2) the need for transparency and accountability for sustaining a data-sharing framework involving public authorities, research organisations, industry and citizens; and (3) the need for interoperable data and processes. Taking stock of these challenges, this article puts forward policy recommendations to enable the provision of pan-European data-driven healthcare services and to build a transparent and trustworthy framework for citizens.

Type
Articles
Information
European Journal of Risk Regulation , Volume 11 , Special Issue 4: Beyond COVID-19: Towards a European Health Union , December 2020 , pp. 884 - 893
Copyright
© The Author(s), 2020. Published by Cambridge University Press

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References

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16 Renda and Castro, supra, note 5.

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23 European Commission, supra, note 1.

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26 Given the recent adoption of the Recommendation, its impact is still to be assessed.

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32 This recommendation is also echoed in the report of the Strategic Forum for Important Projects of Common European Interest: Strategic Forum on Important Projects of Common European Interest, “Strengthening Strategic Value Chains for a future-ready EU Industry” (2019), p 48 <https://ec.europa.eu/docsroom/documents/37824> (last accessed 17 July 2020).

33 See: “Secondary use of health and social data” (Ministry of Social Affairs and Health, Finland) <https://stm.fi/en/secondary-use-of-health-and-social-data> (last accessed 17 July 2020).

34 Supra, note 25.

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36 The strategy, to be published in 2021, was announced as a key action of the Commission’s digital agenda for the coming years. See: Communication from the Commission to the European Parliament, the Council, the European Economic and Social Committee and the Committee of the Regions, Shaping Europe’s digital future, COM/2020/67 final <https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=CELEX:52020DC0067> (last accessed 11 September 2020).

37 Such issues are mentioned in the communication from the Commission on a European strategy for data: European Commission, supra, note 1, p 7.

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