Health Data, Public Interest, and Surveillance for Non-health-Related Purposes

Abstract

A policy of surveillance which interferes with the fundamental right to a private life requires credible justification and a supportive evidence base. The authority for such interference should be clearly detailed in law, overseen by a transparent process and not left to the vagaries of administrative discretion. If a state surveils those it governs and claims the interference to be in the public interest, then the evidence base on which that claim stands and the operative conception of public interest should be subject to critical examination. Unfortunately, there is an inconsistency in the regulatory burden associated with access to confidential patient information for non-health-related surveillance purposes and access for health-related surveillance or research purposes. This inconsistency represents a systemic weakness to inform or challenge an evidence-based policy of non-health-related surveillance. This inconsistency is unjustified and undermines the qualities recognised to be necessary to maintain a trustworthy confidential public health service. Taking the withdrawn Memorandum of Understanding (MoU) between NHS Digital and the Home Office as a worked example, this chapter demonstrates how the capacity of the law to constrain the arbitrary or unwarranted exercise of power through judicial review is not sufficient to level the playing field. The authors recommend 'levelling up' in procedural oversight, and adopting independent mechanisms equivalent