Person-centred data sharing: Empirical studies in private individuals’ attitudes

Abstract

Background Recognising the power of data analytics, researchers are anxious to gain access to personal data either directly from data subjects or via research data sets. This requires a secure environment, such as a trusted research environment (TRE). However, it is unclear how the data subjects themselves regard sharing their data with TREs, especially if research goals are difficult to specify upfront or data are used for secondary purposes, making informed consent difficult to manage. We review three empirical studies to throw some light on individual attitudes to sharing health data. Methods Three anonymous, online surveys were run. The first involving 800 UK residents aimed at understanding how participants view the health data security. The second involving 500 UK residents aimed at identifying private individual views on privacy. These two surveys used a crowdsourcing platform. The third involved 1086 students at a UK university reporting their engagement with a trial diagnostic method for SARS-CoV-2. Results The first survey demonstrated that private individuals could make security decisions though they usually assume the recipient of their personal data to be responsible for all aspects of keeping the data safe. The second highlighted that individuals were aware of privacy risks but are motivated to share their data based on different contextual assumptions. The third, involving the incidental sharing of sensitive data during the SARS-CoV-2 pilot highlighted that prosocial motivations override potential personal benefit of such testing. Conclusions The three, unconnected surveys make clear that there are tensions between private individual understanding of data security and privacy risk, on the one hand, and how they behave, on the other. Respondents rely on data stewards to keep their data safe, though are likely to share even sensitive data for prosocial benefit. These findings have implications for those offering TRE services for research.