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Trust, trustworthiness and sharing patient data for research.

Mark Sheehan1, Phoebe Friesen2, Adrian Balmer3

  • 1Ethox Centre, University of Oxford, Oxford, UK mark.sheehan@philosophy.ox.ac.uk.

Journal of Medical Ethics
|May 20, 2020
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Summary

Understanding trust and trustworthiness in National Health Service (NHS) patient data sharing is crucial. Policies require deeper reflection on these concepts for effective research data governance.

Keywords:
confidentiality/privacyinformation technologyinterests of health personnel/institutionspublic health ethicsresearch ethics

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Area of Science:

  • Bioethics
  • Health Policy
  • Data Governance

Background:

  • Public discourse on National Health Service (NHS) patient data sharing for research frequently emphasizes trust.
  • Existing policy documents address trust and trustworthiness but lack sustained reflection on their core concepts.
  • This gap impacts the management of concerns surrounding patient data use in research.

Purpose of the Study:

  • To analyze the concepts of trust and trustworthiness in the context of NHS patient data sharing for research.
  • To explore how a deeper understanding of trust influences policies and strategies for data sharing.
  • To coproduce an ethical framework for patient data sharing through public engagement.

Main Methods:

  • A 'public ethics' coproduction activity involving members of the public and academic ethicists.
  • Collective consideration of philosophical accounts of trust applied to the NHS context.
  • Development of an argumentative position on trust and data sharing.

Main Results:

  • Current policies on NHS patient data sharing for research may overlook critical nuances of trust and trustworthiness.
  • A more robust conceptualization of trust is needed to inform effective data governance.
  • Public engagement can contribute to coproducing ethically sound approaches to data sharing.

Conclusions:

  • The definition and application of 'trust' and 'trustworthiness' significantly impact policies for sharing NHS patient data in research.
  • Further development of these concepts is essential for building and maintaining public confidence.
  • Coproduction with the public offers a valuable method for refining ethical guidelines in health data research.