The acceptability of participating in data linkage research: research with older Australians

Abstract

Australians are increasingly concerned about the privacy of their data, but the biggest concerns relate to online services and identification fraud. Australians may be supportive of research that uses linked data; however, there have been conflicting findings as to whether formal consent from individuals should be sought, and the views of the older population have not been elicited specifically. A previous survey suggested half of Australians would expect consent to be sought for the use of de‐identified health information for research purposes, but the respondents were not specifically asked if they would expect an opt‐in or opt‐out approach to consent. The objectives of the current study were to determine if older Australians would find it acceptable to be part of the proposed registry and to explore different methods of consent.