Article Text

Download PDFPDF
Trust, trustworthiness and sharing patient data for research
  1. Mark Sheehan1,
  2. Phoebe Friesen2,
  3. Adrian Balmer3,
  4. Corina Cheeks3,
  5. Sara Davidson3,
  6. James Devereux3,
  7. Douglas Findlay3,
  8. Katharine Keats-Rohan3,
  9. Rob Lawrence3,
  10. Kamran Shafiq4
  1. 1Ethox Centre, University of Oxford, Oxford, UK
  2. 2Biomedical Ethics Unit, Social Studies of Medicine, McGill University, Montreal, Quebec, Canada
  3. 3Oxford, UK
  4. 4London, UK
  1. Correspondence to Dr Mark Sheehan, Ethox Centre, University of Oxford, Oxford OX3 7LF, UK; mark.sheehan{at}philosophy.ox.ac.uk

Abstract

When it comes to using patient data from the National Health Service (NHS) for research, we are often told that it is a matter of trust: we need to trust, we need to build trust, we need to restore trust. Various policy papers and reports articulate and develop these ideas and make very important contributions to public dialogue on the trustworthiness of our research institutions. But these documents and policies are apparently constructed with little sustained reflection on the nature of trust and trustworthiness, and therefore are missing important features that matter for how we manage concerns related to trust. We suggest that what we mean by ‘trust’ and ‘trustworthiness’ matters and should affect the policies and guidance that govern data sharing in the NHS. We offer a number of initial, general reflections on the way in which some of these features might affect our approach to principles, policies and strategies that are related to sharing patient data for research. This paper is the outcome of a ‘public ethics’ coproduction activity which involved members of the public and two academic ethicists. Our task was to consider collectively the accounts of trust developed by philosophers as they applied in the context of the NHS and to coproduce an argumentative position relevant to this context.

  • information technology
  • interests of health personnel/institutions
  • public health ethics
  • research ethics
  • confidentiality/privacy
View Full Text

Statistics from Altmetric.com

Footnotes

  • Twitter @mark_sheehan_ox

  • Contributors The workshop was organised and led by MS and PF. MS drafted an initial series of bullet points arising from the discussion and then drafted the first version of the paper. All authors contributed to the discussion over the 3 days of the workshop and shaped the ideas that went into the final version. All authors comment on the paper across the series of drafts.

  • Funding The workshop was funded by the Oxford NIHR Biomedical Research Centre.

  • Competing interests None declared.

  • Patient consent for publication Not required.

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

  • Data availability statement No data are available.

Request Permissions

If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.