Sharing confidential health data for research purposes in the UK: where are ‘publics’ in the public interest?

Annie Sorbie

doi:10.1332/174426419x15578209726839

Abstract

In this article I respond to the tendency of the law to approach ‘the public interest’ as a legal test, thereby drawing the criticism that this narrow notion of what purports to be in the public interest is wholly disconnected from the views of actual publics, and lacks social legitimacy. On the other hand, to simply extrapolate outputs from public engagement work into policy (or indeed law) is equally problematic, and risks being at best ineffective and at worst reinforcing existing inequalities. Given this apparent disconnect between these conceptions of the public interest, and the shortfalls inherent in each, this article scrutinises this disjuncture. I argue that the application of a processual lens to the construction of the legal and regulatory role of the public interest sheds light on how legal notions of the public interest, and attitudes of actual publics towards data sharing, might be reconciled. I characterise this processual approach as being iterative and flexible, specifically drawing attention to the way that multiple actors, processes and interests interact, change and evolve over time in the health research endeavour. This approach is elaborated through two case studies that illustrate how the public interest appears in law (broadly conceived). Its application provides novel insights into the ways in which the public interest can be crafted within and beyond the law to better inform the development of health research regulation.

Highlights

A recent joint Royal Society and British Academy report on data use and governance in the 21st century points to the advances that effective data sharing and linkage may spur in healthcare and treatment discovery, and the significant choices and dilemmas this raises.A central tension is the need to promote data innovation while meeting the needs of society and reflecting public interests (British Academy and Royal Society, 2017)
The question of how this value is realised remains ‘a crucial one to get right because of the implications for public confidence’ (House of Lords, 2018). This snapshot from an ongoing debate in the UK about how health data is used for purposes beyond direct care captures a persistent anxiety about the interplay between ‘public interests’ and the views of actual publics.This is exacerbated because, for reasons I will come to, it is often a legal requirement that health data may only be made available to researchers when this is ‘in the public interest’
While the approach itself is not predicated upon a necessary link with actual publics’ views, the processual analysis draws attention to the ways that, in these contexts, publics’ views on the acceptability of data sharing and linkage do bear on the law as the public interest is operationalised and disseminated in particular contexts.This can be contrasted with a linear, process-driven account of the public interest which, in seeking to minimise uncertainty and the effect of the passage of time, can overlook these interactions

Summary

Introduction

A recent joint Royal Society and British Academy report on data use and governance in the 21st century points to the advances that effective data sharing and linkage may spur in healthcare and treatment discovery, and the significant choices and dilemmas this raises.A central tension is the need to promote data innovation while meeting the needs of society and reflecting public interests (British Academy and Royal Society, 2017). The question of how this value is realised remains ‘a crucial one to get right because of the implications for public confidence’ (House of Lords, 2018) This snapshot from an ongoing debate in the UK about how health data is used for purposes beyond direct care captures a persistent anxiety about the interplay between ‘public interests’ and the views of actual publics.This is exacerbated because, for reasons I will come to, it is often a legal requirement that health data may only be made available to researchers when this is ‘in the public interest’. To extrapolate outputs from public engagement work into policy (or law) is problematic.As I outline below, to do so risks being at best ineffective and at worst reinforcing existing inequalities Given this apparent disconnect between these conceptions of the public interest, and the shortfalls inherent in each, this article scrutinises this disjuncture. Its application provides novel insights into the ways in which the public interest can be crafted within and beyond the law to better inform the development of health research regulation

Background

Methods

Concluding remarks