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In response to Ballantyne and Schaefer’s ‘Consent and the ethical duty to participate in health data research’
  1. Nilay Hepgul1,
  2. Katherine E Sleeman1,
  3. Alice M Firth1,
  4. Anna Johnston1,
  5. James T H Teo2,
  6. William Bernal2,
  7. Richard J B Dobson3,
  8. Irene J Higginson1
  1. 1Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, Cicely Saunders Institute of Palliative Care, Policy and Rehabilitation, King’s College London, London, UK
  2. 2King’s College Hospital NHS Foundation Trust, London, UK
  3. 3Department of Biostatistics and Health Informatics, Institute of Psychiatry Psychology and Neuroscience, King’s College London, London, UK
  1. Correspondence to Dr Nilay Hepgul, Cicely Saunders Institute of Palliative Care, Policy & Rehabilitation, Florence Nightingale Faculty of Nursing, Midwifery & Palliative Care, King’s College London, London SE5 9PJ, UK; nilay.hepgul{at}kcl.ac.uk

Abstract

We welcome Ballantyne & Schaefer’s discussion of the issues concerning consent and use of health data for research. In response to their acknowledgement of the need for public debate and discussion, we provide evidence from our own public consultation on this topic.

  • confidentiality/privacy
  • informed consent
  • information technology
  • patient perspective
  • research ethics

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

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Footnotes

  • Contributors NH, AMF and AJ: conducted the patient consultation. NH: prepared the initial draft and subsequent versions of this manuscript. All authors contributed to the conception of the work, commented on the initial draft and approved the final version of the manuscript.

  • Funding This work was supported by the National Institute for Health Research (NIHR) Collaboration for Leadership in Applied Health Research and Care South London (NIHR CLAHRC South London) at King’s College Hospital NHS Foundation Trust and the NIHR Biomedical Research Centre at South London and Maudsley NHS Foundation Trust and King’s College London . The views expressed in this article are those of the author(s) and not necessarily those of the NHS, the NIHR, or the Department of Health and Social Care.

  • Competing interests None declared.

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

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