Abstract
Secondary health data are becoming important sources of information for health research. Unfortunately, there are few national guidelines outlining clear criteria for data custodians when adjudicating requests for access to these data. This presents a particular challenge to researchers and even public health officials interested in multi-jurisdictional analysis of health data. While some of the problem in developing consistent national standards may stem from differences in provincial privacy law, it may also be the result of imprecise terminology, particularly around the concept of identifiability. This commentary discusses the differences between identifiability and self-identification with the hope of contributing to a broader discussion establishing national guidelines for the use of secondary health data in research.
Key words: Data protection, data sharing, medical informatics
Résumé
Les données sanitaires secondaires deviennent d’importantes sources d’information pour la recherche en santé. Malheureusement, il y a peu de lignes directrices nationales qui définissent des critères clairs pour les opérateurs de banques de données lorsqu’ils statuent sur les demandes d’accès aux données. C’est un problème particulier pour les chercheurs, et même pour les autorités de santé publique, qui souhaitent analyser des données sanitaires à l’échelle intergouvernementale. Une partie de la difficulté d’élaborer des normes nationales uniformes pourrait tenir aux différences dans les lois provinciales sur la protection des renseignements personnels, mais elle pourrait aussi résulter du manque de précision de la terminologie, tout particulièrement autour de la notion d’identifiabilité. Nous expliquons ici les différences entre l’identifiabilité et l’autoidentification dans l’espoir de contribuer à une discussion plus vaste sur l’établissement de lignes directrices nationales sur l’utilisation des données sanitaires secondaires à des fins de recherche.
Mots clés: protection de données, partage de données, informatique Médicale
Footnotes
Conflict of Interest: None to declare.
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