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Trusted research environments are definitely about trust
  1. Paul Affleck1,
  2. Jenny Westaway2,
  3. Maurice Smith3,
  4. Geoff Schrecker4
  1. 1 University of Leeds Faculty of Medicine and Health, Leeds, UK
  2. 2 Independent Advisor in Public Policy and Citizen Engagement, Leeds, UK
  3. 3 GP, Liverpool, UK
  4. 4 Retired GP and Independent Consultant in Clinical Informatics, Derbyshire, UK
  1. Correspondence to Mr Paul Affleck, University of Leeds Faculty of Medicine and Health, Leeds, UK; p.a.affleck{at}leeds.ac.uk

Abstract

In their highly topical paper, Graham et al argued that Trusted Research Environments (TREs) are not actually about trust because they reduce or remove ‘…the need for trust in the use and sharing of patient health data’. We believe this is fundamentally mistaken. TREs mitigate or remove some risks, but they do not address all public concerns. In this regard, TREs provide evidence for people to decide whether the bodies holding and using their data can be trusted. TREs may make it easier for people to trust but there is still a need for that trust.

  • Ethics- Research

https://doi.org/10.1136/jme-2022-108678

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    Footnotes

    • Twitter @drmauricesmith

    • Contributors PA contributed to the conception of the work, wrote the initial draft and led the writing of subsequent drafts. JW, MS and GS contributed to the conception of the work and reviewing the various drafts.

    • Funding This project was funded by Cancer Research UK (C23424/A23706).

    • Competing interests This article represents the personal opinions of the authors and not the views of any organisation, body or committee. PA is a programme manager for the UK Colorectal Cancer Intelligence Hub, which is supported by Cancer Research UK (grant C23434/A23706). He is also: a Specialist Ethics Member/Co-Deputy Chair of the Independent Group Advising on the Release of Data (IGARD); a Member of the UK Longitudinal Linkage Collaboration’s Involvement Network and a lay member of the Ministry of Defence Research Ethics Committee. JW is a lay member of IGARD. MS is a part-time GP working in Liverpool. He is also CCIO & Caldicott Guardian for Liverpool Place (as part of Cheshire and Merseyside Integrated Care Board) and a specialist GP Member of IGARD. GS is a retired GP. He is a specialist GP Member of IGARD and an independent consultant in Clinical Informatics.

    • Provenance and peer review Not commissioned; internally peer reviewed.

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