Secondary Uses of Health Data: Impact of Transparency

Authors

  • Emmanuel Bilodeau Département de philosophie et d’éthique appliquée; Groupe de recherche interdisciplinaire en informatique de la santé, Faculté des sciences/Faculté de médecine et des sciences de la santé, Université de Sherbrooke, Sherbrooke, Québec, Canada https://orcid.org/0009-0000-6816-4405
  • Annabelle Cumyn Département de médecine, Faculté de médecine et des sciences de la santé; Groupe de recherche interdisciplinaire en informatique de la santé, Faculté des sciences/Faculté de médecine et des sciences de la santé, Université de Sherbrooke, Sherbrooke, Québec, Canada https://orcid.org/0000-0002-6802-6472
  • Jean Frédéric Ménard Faculté de Droit; Groupe de recherche interdisciplinaire en informatique de la santé, Faculté des sciences/Faculté de médecine et des sciences de la santé, Université de Sherbrooke, Sherbrooke, Québec, Canada https://orcid.org/0000-0002-8482-9443
  • Adrien Barton Groupe de recherche interdisciplinaire en informatique de la santé, Faculté des sciences/Faculté de médecine et des sciences de la santé, Université de Sherbrooke, Sherbrooke, Québec, Canada; Institut de recherche en informatique de Toulouse, Toulouse, France https://orcid.org/0000-0001-5500-6539
  • Roxanne Dault Groupe de recherche interdisciplinaire en informatique de la santé, Faculté des sciences/Faculté de médecine et des sciences de la santé, Université de Sherbrooke, Sherbrooke, Québec, Canada https://orcid.org/0000-0003-1444-553X
  • Jean-François Ethier Département de médecine, Faculté de médecine et des sciences de la santé; Groupe de recherche interdisciplinaire en informatique de la santé, Faculté des sciences/Faculté de médecine et des sciences de la santé, Université de Sherbrooke, Sherbrooke, Québec, Canada https://orcid.org/0000-0001-9408-0109

DOI:

https://doi.org/10.7202/1112284ar

Keywords:

impacts, transparency, health data, secondary uses, learning health systems

Language(s):

French

Abstract

The notion of transparency regularly comes up in discussions about the secondary uses of health data. Few studies, however, examine the impact of the presence or absence of transparency on members of the public. This literature review responds to this gap in the scientific literature. It is the result of a secondary analysis of 124 texts from an exploratory review on transparency, following the PRISMAS-ScR guidelines. The results help to identify negative or positive impacts and associate these with certain communication components relating to secondary uses of health data. They also make it possible to identify the components associated with communication deemed transparent or opaque by stakeholders. Transparency, and more specifically continuity of communication, is strongly associated with increased trust and social acceptability, whereas members of the public generally perceive a lack of transparency negatively. This literature review also deepens our understanding of the potential negative impacts of transparent communication.

(c) Han Han Li

Downloads

Published

2024-06-21

How to Cite

[1]
Bilodeau E, Cumyn A, Ménard JF, Barton A, Dault R, Ethier J-F. Secondary Uses of Health Data: Impact of Transparency. Can. J. Bioeth 2024;7:118-37. https://doi.org/10.7202/1112284ar.

Issue

Vol. 7 No. 2-3 (2024): Open Issue & CBS Workshops

Section

Articles

License

Copyright (c) 2024 Emmanuel Bilodeau, Annabelle Cumyn, Jean Frédéric Ménard, Adrien Barton, Roxanne Dault, Jean-François Etiher

Creative Commons License

This work is licensed under a Creative Commons Attribution 4.0 International License.

The Canadian Journal of Bioethics applies the Creative Commons Attribution 4.0 International License to all its publications. Authors therefore retain copyright of their publication, e.g., they can reuse their publication, link to it on their home page or institutional website, deposit a PDF in a public repository. However, the authors allow anyone to download, reuse, reprint, modify, distribute, and/or copy their publication, so long as the original authors and source are cited.