There is a long history in science and technology studies of tracking problematic objects, such as controversies, matters of concern, and issues, using various digital tools. But what happens when public problems do not play out in these familiar ways? In this paper, we will think through the methodological implications of studying “problems” in relation to recent events surrounding the sharing of patient data in the National Health Service in the United Kingdom. When a data sharing agreement called care.data was (...) announced in 2013, nearly 1.5 million citizens chose to opt out. Yet, in subsequent years, there has been little evidence of a robust public mobilising around data sharing. We will attempt to track this elusive ‘non problem’ using some digital tools developed in STS for the purpose of mapping issues and problem definitions within science. Although we find these digital tools are unable to capture the “problem,” the process of searching helps us map the terrain of the case and forces us to consider wider definitions. (shrink)

It is widely acknowledged that trust plays an important role for the acceptability of data sharing practices in research and healthcare, and for the adoption of new health technologies such as AI. Yet there is reported distrust in this domain. Although in the UK, the NHS is one of the most trusted public institutions, public trust does not appear to accompany its data sharing practices for research and innovation, specifically with the private sector, that have been introduced in recent years. (...) In this paper, we examine the question of, what is it about sharing NHS data for research and innovation with for-profit companies that challenges public trust? To address this question, we draw from political theory to provide an account of public trust that helps better understand the relationship between the public and the NHS within a democratic context, as well as, the kind of obligations and expectations that govern this relationship. Then we examine whether the way in which the NHS is managing patient data and its collaboration with the private sector fit under this trust-based relationship. We argue that the datafication of healthcare and the broader ‘health and wealth’ agenda adopted by consecutive UK governments represent a major shift in the institutional character of the NHS, which brings into question the meaning of public good the NHS is expected to provide, challenging public trust. We conclude by suggesting that to address the problem of public trust, a theoretical and empirical examination of the benefits but also the costs associated with this shift needs to take place, as well as an open conversation at public level to determine what values should be promoted by a public institution like the NHS. (shrink)