Engagement and Co-Design: Routes to Lawful Research?

The `deficit' model of engagement, which educates the public about research, has been subject to increasing criticism, as if people's attitudes arise from ignorance which should be corrected. Nevertheless, a number of attempts to understand public views on the use of Administrative Data for research have used informative models. We refer to the findings of an exploratory study of individual attitudes towards Administrative Data Research, which indicate that views and norms around ADR are incipient and ambivalent, especially when compared to perceptions of `conventional' medical research. We consider the legal obligations administrative data controllers have to shape reasonable expectations in light of this uncertainty. Engagement which informs the public about research does have value. It indicates what the attitudes of the public might be, were certain facts about research more commonly known, and thus underscores the importance of public information campaigns. However, this work cannot provide an accurate representation of public opinion as a whole in the absence of wider dissemination of information across society. There will inevitably be a number of facets to public engagement: information, representation and transparency. Each of these will correlate differently with data controllers' legal obligations, and it is essential to understand these connections.