This paper is in the following e-collection/theme issue:

Digital Health Reviews (1447) Personal Health Records, Patient-Accessible Electronic Health Records, Patient Portals (620) Consumer & Patient Education and Shared-Decision Making (743) Participatory Medicine & E-Patients (821) Clinical Informatics (1112)

Published on in Vol 25 (2023)

Preprints (earlier versions) of this paper are available at https://preprints.jmir.org/preprint/45002, first published .
Patients’ and Members of the Public’s Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review

Patients’ and Members of the Public’s Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review

Patients’ and Members of the Public’s Wishes Regarding Transparency in the Context of Secondary Use of Health Data: Scoping Review

Authors of this article:

Annabelle Cumyn1, 2 Author Orcid Image ;   Jean-Frédéric Ménard2, 3 Author Orcid Image ;   Adrien Barton2, 4 Author Orcid Image ;   Roxanne Dault2 Author Orcid Image ;   Frédérique Lévesque2 Author Orcid Image ;   Jean-François Ethier1, 2 Author Orcid Image
Article Authors Cited by (8) Tweetations (3) Metrics

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  2. Hulin A, Guiraud É, Lawarée J, Langlois L. Le partage et la mise en commun des données de santé : quels enjeux pour un objectif d’innovation sociale responsable ?. Éthique publique 2023;(vol. 25, n° 1) View
  3. Verbeke K, Jain C, Shpendi A, Borry P. Safeguarding Users of Consumer Mental Health Apps in Research and Product Improvement Studies: an Interview Study. Neuroethics 2024;17(1) View
  4. Bilodeau E, Cumyn A, Ménard J, Barton A, Dault R, Ethier J. Utilisations secondaires des données de santé : impacts de la transparence. Canadian Journal of Bioethics 2024;7(2-3):118 View
  5. Riou C, El Azzouzi M, Hespel A, Guillou E, Coatrieux G, Cuggia M. Ensuring GDPR Compliance and Security in a Clinical Data Warehouse: Challenges and Insights from a University Hospital (Preprint). JMIR Medical Informatics 2024 View
  6. Jackson B, Kaplan B, Schreiber R, DeMuro P, Nichols-Johnson V, Ozeran L, Solomonides A, Koppel R. Ethical Dimensions of Clinical Data Sharing by U.S. Health Care Organizations for Purposes beyond Direct Patient Care: Interviews with Health Care Leaders. Applied Clinical Informatics 2025;16(01):090 View
  7. Jackson B, Rashidi H, Lennerz J, de Baca M. Ethical and Regulatory Perspectives on Generative Artificial Intelligence in Pathology. Archives of Pathology & Laboratory Medicine 2025;149(2):123 View
  8. Woodbury R, Beans J, Hiratsuka V. Trusted partners, community priorities, and data protections: requirements for precision medicine research with Alaska Native peoples. Journal of Community Genetics 2025 View