Trust and the Goldacre Review: why trusted research environments are not about trust
11th August 2022
Introduction
The significance of big data for driving health research and improvements in patient care is well recognised. Along with these potential benefits, however, come significant challenges, including those concerning the sharing and linkage of health and social care records.
Recently, there has been a shift in attention towards a paradigm of data sharing centred on the ‘trusted research environment’ (TRE). TREs are being widely adopted by the UK’s health data initiatives including Health Data Research UK (HDR UK),1 Our Future Health2 and Genomics England.3 A recent review commissioned by the UK’s Department of Health and Social Care (hereafter referred to as the ‘Goldacre Review’) places TREs at the heart of its recommendations around the future of National Health Service (NHS) health data sharing for research, describing them as the ‘clear path forward’ to a health data system in which trust is ‘earned’ through ‘provable, credible steps to protect patient privacy, and by being transparent with everyone about everything that is done with their deepest medical secrets’.4
We argue that rather than building public trust, the TRE model actually reduces the need for trust in the use and sharing of patient health data. This is because trust is importantly connected to vulnerability and uncertainty; an essential part of trusting someone is accepting that one’s trust could be disappointed or betrayed. In attempting to provide assurances or guarantees of data privacy and security, TREs strive to remove this vulnerability, and so remove the need for trust. We do not see this as a problem and are broadly supportive of this kind of data sharing model because of the increased security and oversight it provides. However, having argued that TREs are not actually concerned with trust, we consider the importance of being precise about the words that we use in the context of health data sharing.
Related Link:
Citation:
Available at https://doi.org/10.1136/jme-2022-108435