open access publication

Editorial Material, 2023

The European health data space: Too big to succeed?

HEALTH POLICY, ISSN 0168-8510, 0168-8510, Volume 135, 10.1016/j.healthpol.2023.104861

Contributors

Marelli, Luca (Corresponding author) [1] [2] [3] Stevens, Marthe [4] Sharon, Tamar 0000-0003-0155-9220 [4] Van Hoyweghen, Ine 0000-0002-9402-2918 [3] Boeckhout, Martin 0000-0002-7184-2307 [5] Colussi, Ilaria [6] Degelsegger-Marquez, Alexander 0000-0002-0493-4711 [7] El-Sayed, Seliem [8] Hoeyer, Klaus 0000-0002-2780-4784 [9] van Kessel, Robin 0000-0001-6309-6343 [10] [11] [12] Zajac, Dorota Krekora [13] Matei, Mihaela [14] Roda, Sara [15] [16] Prainsack, Barbara 0000-0002-6335-1532 [8] Schluender, Irene [17] Shabani, Mahsa [18] [19] Southerington, Tom [20] [21]

Affiliations

  1. [1] LITA, Via Fratelli Cervi 93, I-20054 Segrate, MI, Italy
    2. [NORA names: Italy; Europe, EU; OECD];
  2. [2] Univ Milan, Dept Med Biotechnol & Translat Med, I-20129 Milan, Italy
    3. [NORA names: Italy; Europe, EU; OECD];
  3. [3] Katholieke Univ Leuven, Ctr Sociol Res, B-3000 Leuven, Belgium
    4. [NORA names: Belgium; Europe, EU; OECD];
  4. [4] Radboud Univ Nijmegen, Dept Ethics & Polit Philosophy, NL-6525 HT Nijmegen, Netherlands
    5. [NORA names: Netherlands; Europe, EU; OECD];
  5. [5] Lygature, NL-3521 AL Utrecht, Netherlands
    6. [NORA names: Netherlands; Europe, EU; OECD];

Abstract

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.

Keywords

Data governance, Data sharing, EHDS, European health data space, Public value

Data Provider: Clarivate

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