The European health data space: Too big to succeed?

Marelli, Luca; Sharon, Tamar; Hoyweghen, Ine Van; Boeckhout, Martin; Colussi, Ilaria Anna; Degelsegger-Márquez, Alexander; El-Sayed, Seliem; Hoeyer, Klaus; Kessel, Robin van; Zając, Dorota; Matei, Mihaela; Roda, Sara; Prainsack, Barbara; Schlünder, Irene; Shabani, Mahsa; Southerington, Tom

doi:10.1016/j.healthpol.2023.104861

Cited by 16 publications

(10 citation statements)

References 13 publications

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“…We stay with this expressive image of a dance between public and private sectors but delve more deeply into who choreographs this techno-tango, through what moves and with what degrees of freedom, and most importantly with what objectives in mind. While we agree with Marelli et al (2023) that current proposals for the EHDS only serve to cement the EU's long-term innovation-friendly trajectory, we also propose a range of measures that could be adopted to safeguard public health value in this and future policy proposals – but only if this value is defined and expressed.…”

Section: Introductionmentioning

confidence: 60%

“…It will also make it possible for researchers, innovators and policy makers to use this electronic health data in a ‘trusted and secure way that preserves privacy’ [33, p.1]. However, as Marelli et al (2023, p. 2) have recently argued, this proposal's ‘aim of stimulating the European economy by granting free access to citizens’ health data’ fails to re-direct the Commission's digital health choreography towards the public benefit in a significant way. Many other public commentators appear critical too.…”

Section: Still Dancin’: the Promise Of A Ehdsmentioning

confidence: 99%

“…In response, the Commission decided to relax the rules around the GDPR [35]. Yet, as Marelli et al (2023) argue, the risks to data privacy are now much less prominent concern than the risk of a net loss in public value in a proposal that foresees an obligation by health professionals to share patient data in order to realize (yet another) imaginary of an ‘innovation-friendly’ digital health ecosystem.…”

Section: Still Dancin’: the Promise Of A Ehdsmentioning

confidence: 99%

“…In June 2023, a group of academic experts in digital health expressed their deep concern about the proposal for a European Health Data Space (EHDS), which they saw likely to be ‘eroding rather than increasing the public value generated through health data sharing’ (Marelli et al, 2023, p. 1). Elsewhere, health researchers warned that ‘healthcare systems must get fair value for their data’ in collaborations with industry, given the substantial data assets these systems now represent (Bradley et al, 2022).…”

Section: Introductionmentioning

confidence: 99%

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Choreographing for public value in digital health?

Gross,

Geiger

2023

Big Data & Society

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Entanglements between public and private entities in digital health are not new, yet we do not have full insight into how these public-private dances are choreographed or what notions of public value drive governments’ appetite for investing into or collaborating with private digital health firms around health data. We examine key events, actors, public discussions, policy deliberations and regulations for over 30 years to find that European Union policy has paved an innovation-friendly path for technology companies entering healthcare. The recent pandemic has normalized these collaborations even further. The paper also finds that conceptualizations of public value in digital health mostly relate to economic aspects – markets, jobs and money. Other interpretations, such as public health, long-term sustainability or the common good, tend to be sidelined. The paper closes by considering whether the advent of the European Health Data Space will change this trajectory before giving suggestions on how a focus on public health value can be re-established.

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Section: Introductionmentioning

confidence: 60%

Section: Still Dancin’: the Promise Of A Ehdsmentioning

confidence: 99%

Section: Still Dancin’: the Promise Of A Ehdsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Choreographing for public value in digital health?

Gross,

Geiger

2023

Big Data & Society

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“…Marelli et al (2023) [37],Kympouropoulos (2023) [38], andMateus et al (2023) [39] discuss the political and public management implications of the European Health Data Space.•Industry: Alexopoulos et al (2023)[40] focus on resilient manufacturing value chains, highlighting the importance of reliable data sharing. Farahani and Monsefi (2023)[41] and Bevilacqua et al (2023)[42] address the application of data spaces in the Industrial Internet of Things and Industry 4.0.…”

mentioning

confidence: 99%

Conceptual Framework and Prospective Analysis of EU Tourism Data Spaces

Ordóñez-Martínez,

Seguí-Pons,

Ruiz-Pérez

2023

Sustainability

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This article delves deeply into the burgeoning field of Tourism Data Spaces (TDS) in Europe, focusing on how technologies like Big Data and IoT are redefining the tourism sector. This technological shift is steering traditional tourist destinations towards smarter, more sustainable models. The study utilizes a multifaceted approach, combining documentary and bibliographical analysis with empirical data from the EU’s DATES project. By employing the Drivers, Pressures, State, Impacts, Responses (DPSIR) model, it provides a nuanced understanding of the dynamics in TDS. The findings underscore TDS’s pivotal role in improving decision-making and personalizing tourism services. The study also acknowledges the growing need for detailed tourism information to enhance travel planning and experience personalization. Furthermore, it highlights the importance of efficient and secure data management in tourism. This comprehensive analysis points to a future where data-driven insights foster more sustainable, tailored travel experiences. Additionally, the research illuminates both the challenges and prospects inherent in implementing TDS, stressing the importance of clear governance, technical standards, and balancing diverse stakeholder interests in the tourism industry. By addressing these challenges, the article posits that TDS can make a significant contribution to the innovation and sustainability of the tourism sector.

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The European Health Data Space as a Case Study

Dove

2024

Ethics & Human Research

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In May 2022, the European Commission proposed the launch of a health‐specific data sharing framework called the European Health Data Space (EHDS), underpinned by legislation, for the use of electronic health data by patients and for research, innovation, policy‐making, patient safety, statistics, or regulatory purposes. In this essay, I review some of its more contentious features based on the latest version of the legislative proposal. I suggest that the EHDS is a useful case study to illustrate the need for a translational bioethics approach that shines a critical analytical light on contentious aspects of large‐scale research infrastructures.

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The European health data space: Too big to succeed?

Cited by 16 publications

References 13 publications

Choreographing for public value in digital health?

Choreographing for public value in digital health?

Conceptual Framework and Prospective Analysis of EU Tourism Data Spaces

The European Health Data Space as a Case Study

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