Despite strong support for health research in the UK, many people currently opt not to share their health data because they do not trust that their data will be handled appropriately. This lack of trust is widely acknowledged but what is missing from the literature is a theoretical understanding of what underlies this lack of trust. This article presents an original, empirically-based account of the source of this lack of trust based on interviews conducted with those who were unwilling to share their GP data with NHS Digital’s General Practice Data for Planning and Research (GPDPR) programme. The participants told us that they did not feel the data was being treated as ‘my data’. In this article, we explore what this concept means to our participants and argue that those responsible for sharing health data need to demonstrate commitment to patients’ values and interests as well as data security.
Bowden et al. (Wed,) studied this question.