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

Digital Health Reviews (1724) Personal Health Records, Patient-Accessible Electronic Health Records, Patient Portals (698) Consumer & Patient Education and Shared-Decision Making (862) Participatory Medicine & E-Patients (873) Clinical Informatics (1325)

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 (17) Tweetations (3) Metrics

Journals

  1. Pronicki Ł, Czech M, Gujski M, Boguszewska N. Awareness, Attitudes and Willingness to Donate Biological Samples to a Biobank: A Survey of a Representative Sample of Polish Citizens. Healthcare 2023;11(20):2714 View
  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 General Data Protection Regulation Compliance and Security in a Clinical Data Warehouse From a University Hospital: Implementation Study. JMIR Medical Informatics 2025;13:e63754 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;16(3):311 View
  9. van den Akker O, Thibault R, Ioannidis J, Schorr S, Strech D. Transparency in the secondary use of health data: assessing the status quo of guidance and best practices. Royal Society Open Science 2025;12(3) View
  10. Goodings A, Fadahunsi K, Tarn D, Lutomski J, Chhor A, Shiely F, Henn P, O'Donoghue J. Determinants of Continuous Smartwatch Use and Data-Sharing Preferences With Physicians, Public Health Authorities, and Private Companies: Cross-Sectional Survey of Smartwatch Users. Journal of Medical Internet Research 2025;27:e67414 View
  11. Olsen Q, Dyda A, Woods L, Lobo E, Eden R, Krahe M, Richards B, Pather N, McGee L, Sullivan C, Pole J. Worldwide willingness to share health data high but privacy, consent and transparency paramount, a meta-analysis. npj Digital Medicine 2025;8(1) View
  12. Ménard J, Cohen D, Masse M, Adhikari N, Cook D, Heels-Ansdell D, Sprague S, D’Aragon F, Kho M, Lamontagne F, Cumyn A. Communicating Results of a Critical Care Trial — A Survey of Participants and Family Members. NEJM Evidence 2025;4(10) View
  13. Hauschildt K. Dissemination Feasibility Follows Robust Informed Consent. NEJM Evidence 2025;4(10) View
  14. Seeley J, Curtis Maillet D, Balcom S, Durepos P. Navigating Privacy in Health Data Sharing: A Patient-Centric Approach to Health Information Exchange. Healthcare Management Forum 2025 View
  15. Krahe M, Eden R, Pole J, Richards B, Olsen Q, Dyda A, Lobo E, Pather N, Sullivan C, Woods L. A scientometric review of health data sharing for secondary use: Insights, frontiers and the path ahead. Health Information Management Journal 2025 View
  16. Dressle R, Riemann D, Thoma N, Erler C, Burmeister R, Jogwitz B, Domschke K, Spiegelhalder K, Boldt J, Wiertz S, Feige B. Developing a Data Trust Model (Not Only) for Sleep Research: Conceptual Study and Quantitative Survey. JMIR Human Factors 2025;12:e66513 View

Books/Policy Documents

  1. Sahu S, Mallick N, Sethi R, Panda P. Artificial Intelligence and Blockchain in Precision Medicine and Virology. View