Abstracts
Résumé
La notion de transparence ressort régulièrement des discussions autour des utilisations secondaires des données de santé. Peu d’études se penchent toutefois sur les impacts de la présence ou de l’absence de transparence ou de son absence sur les membres du public. Cette revue de littérature répond à cette lacune. Elle résulte d’une analyse secondaire de 124 textes issus d’une recension de la portée sur la transparence conformément aux lignes directrices PRISMAS-ScR. Les résultats contribuent à identifier les impacts négatifs ou positifs et à les associer à certaines composantes communicationnelles relatives aux utilisations secondaires de données de santé. Ils permettent également d’identifier les composantes associées à une communication jugée transparente ou opaque par les parties prenantes. La transparence, et plus particulièrement la continuité de la communication, est fortement associée à une augmentation de la confiance et de l’acceptabilité sociale alors qu’en général, les membres du public perçoivent négativement un manque de transparence. Cette revue de littérature approfondit également les connaissances sur les risques d’impacts négatifs de la communication transparente.
Mots-clés :
- impacts,
- transparence,
- données de santé,
- utilisations secondaires,
- systèmes de santé apprenants
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.
Keywords:
- impacts,
- transparency,
- health data,
- secondary uses,
- learning health systems
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Appendices
Remerciements / Acknowledgements
Les autrices et auteurs aimeraient remercier le professeur Daniel Caron pour son éclairage sur le concept de transparence. Nous aimerions également remercier Frédérique Lévesque pour sa contribution au processus de sélection des textes et Timothey Bédard pour son travail dans le codage des textes. Ce travail était soutenu par la Chaire en informatique de la santé de l’Université de Sherbrooke.
The authors would like to thank Professor Daniel Caron for his insight into the concept of transparency. We would also like to thank Frédérique Lévesque for her contribution to the text selection process and Timothey Bédard for his work in coding the texts. This work was supported by the Chaire en informatique de la santé de l’Université de Sherbrooke.
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