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Peer-reviewedCC BYJournal of medical Internet research

The Personalization-Privacy Paradox in AI-Enabled Health Care: Managing Trust and Governance Under the European Health Data Space.

  • Maxime Ducret1,2
  • Julien Cloarec3
  • Nour Alrabie4
  • Mouna Mouncif-Moungache5
5 affiliations
  1. 1Faculty of Dentistry, Université Claude Bernard Lyon 1, 11 Rue Guillaume Paradin, Lyon, Rhône-Alpes, 69008, France, 33 472722619.
  2. 2Centre de soins dentaires, Pôle d'Odontologie, Hospices Civils de Lyon, Lyon, France.
  3. 3iaelyon School of Management, Université Jean Moulin Lyon 3, Lyon, France.
  4. 4LEREPS, Université Toulouse Jean Jaurès, Toulouse, France.
  5. 5Department of Public Law, Université Jean Monnet, Saint-Étienne, France.
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Abstract

Unlabelled

AI enables increasingly personalized health care, but the data required intensifies long-standing concerns about privacy, confidentiality, and trust as the European Health Data Space (EHDS) expands the primary and secondary use of health data. This viewpoint examines how the EHDS reshapes the personalization-privacy paradox in AI-enabled health care and under what conditions it can manage, rather than resolve, this paradox. Drawing on privacy calculus theory, we analyze the patient-practitioner relationship, the flow of data from primary to secondary use, and the governance mechanisms introduced by Regulation (EU) 2025/327, including data access bodies, data permits, differentiated opt-out rights, and privacy-preserving technologies. We identify 5 governance conditions: purpose-specific governance, accessible opt-out design, practitioner-mediated transparency, privacy-preserving infrastructure, and independent oversight of secondary use actors. When these conditions are met, the EHDS can sustain trust while enabling personalization. We conclude that the EHDS does not eliminate the paradox but can provide a governance architecture to manage it, depending more on implementation quality and patient engagement than on the ambition of the framework itself.

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Cite

BibTeXRIS
BibTeX
@article{ducret2026personalizationprivacy,
  title = {{The Personalization-Privacy Paradox in AI-Enabled Health Care: Managing Trust and Governance Under the European Health Data Space.}},
  author = {Maxime Ducret and Julien Cloarec and Nour Alrabie and Mouna Mouncif-Moungache},
  journal = {Journal of medical Internet research},
  year = {2026},
  month = oct,
  doi = {10.2196/94903},
  url = {https://europepmc.org/article/MED/42954095},
  note = {CC BY},
}
RIS
TY  - JOUR
TI  - The Personalization-Privacy Paradox in AI-Enabled Health Care: Managing Trust and Governance Under the European Health Data Space.
AU  - Maxime Ducret
AU  - Julien Cloarec
AU  - Nour Alrabie
AU  - Mouna Mouncif-Moungache
PY  - 2026
DA  - 2026/10/27
JO  - Journal of medical Internet research
DO  - 10.2196/94903
UR  - https://europepmc.org/article/MED/42954095
AB  - Unlabelled  AI enables increasingly personalized health care, but the data required intensifies long-standing concerns about privacy, confidentiality, and trust as the European Health Data Space (EHDS) expands the primary and secondary use of health data. This viewpoint examines how the EHDS reshapes the personalization-privacy paradox in AI-enabled health care and under what conditions it can manage, rather than resolve, this paradox. Drawing on privacy calculus theory, we analyze the patient-practitioner relationship, the flow of data from primary to secondary use, and the governance mechanisms introduced by Regulation (EU) 2025/327, including data access bodies, data permits, differentiated opt-out rights, and privacy-preserving technologies. We identify 5 governance conditions: purpose-specific governance, accessible opt-out design, practitioner-mediated transparency, privacy-preserving infrastructure, and independent oversight of secondary use actors. When these conditions are met, the EHDS can sustain trust while enabling personalization. We conclude that the EHDS does not eliminate the paradox but can provide a governance architecture to manage it, depending more on implementation quality and patient engagement than on the ambition of the framework itself.
SN  - 1439-4456
SN  - 1438-8871
ER  -