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Informed consent, judicial review and the uncertainties of ethnographic research in sensitive NHS settings

David Hughes

SAGE Research Methods Cases (Online Collection)

Swansea University Author: David Hughes

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DOI (Published version): 10.4135/9781526431561

Abstract

This c'tale from the field' describes events affecting a study of an NHS panel responsible for deciding whether to fund high-cost drugs when the Local Health Board asked the researchers to release audio-recorded data because of an impending judicial review case. Judicial review involves th...

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Published in: SAGE Research Methods Cases (Online Collection)
ISBN: 9781526431561
Published: London Sage 2018
URI: https://cronfa.swan.ac.uk/Record/cronfa33668
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first_indexed 2017-05-13T12:33:19Z
last_indexed 2020-10-22T02:44:24Z
id cronfa33668
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spelling 2020-10-21T11:40:56.2835494 v2 33668 2017-05-13 Informed consent, judicial review and the uncertainties of ethnographic research in sensitive NHS settings f1fbd458e3c75d8b597c0ac8036f2b88 David Hughes David Hughes true false 2017-05-13 FGMHL This c'tale from the field' describes events affecting a study of an NHS panel responsible for deciding whether to fund high-cost drugs when the Local Health Board asked the researchers to release audio-recorded data because of an impending judicial review case. Judicial review involves the legal scrutiny of administrative decisions to decide whether they are lawful. The LHB's request raised ethical issues about whether the terms of research ethics committee approval had been respected and the position of subjects protected, but also issues concerning the university's and researchers' obligations. Various constraints arose from the Data Protection Act 1998, contractual obligations to the Department of Health as funder, and risks to the university and researcher arising from the impending court proceedings. The case describes how possible release of data was negotiated with the various stakeholders, the process via which subjects were asked to permit release, the position of the university administration and its legal advisors, and how data were eventually passed to the LHB. The chapter discusses the dilemmas that emerged, and how pressures from stakeholders make it very difficult for researchers to formulate a principled position not to release data. Lessons learned and possible solutions discussed, including whether risks need to be communicated more clearly to subjects and what steps can be taken to avoid holding compromising data. Digital or visual media SAGE Research Methods Cases (Online Collection) Sage London 9781526431561 ethics, ethnography, judicial review, sensitive research, NHS, rationing, individual patient commissioning 1 1 2018 2018-01-01 10.4135/9781526431561 Edited by Nathan Emmerich COLLEGE NANME Medicine, Health and Life Science - Faculty COLLEGE CODE FGMHL Swansea University 2020-10-21T11:40:56.2835494 2017-05-13T09:42:17.3160606 Faculty of Medicine, Health and Life Sciences School of Health and Social Care - Public Health David Hughes 1
title Informed consent, judicial review and the uncertainties of ethnographic research in sensitive NHS settings
spellingShingle Informed consent, judicial review and the uncertainties of ethnographic research in sensitive NHS settings
David Hughes
title_short Informed consent, judicial review and the uncertainties of ethnographic research in sensitive NHS settings
title_full Informed consent, judicial review and the uncertainties of ethnographic research in sensitive NHS settings
title_fullStr Informed consent, judicial review and the uncertainties of ethnographic research in sensitive NHS settings
title_full_unstemmed Informed consent, judicial review and the uncertainties of ethnographic research in sensitive NHS settings
title_sort Informed consent, judicial review and the uncertainties of ethnographic research in sensitive NHS settings
author_id_str_mv f1fbd458e3c75d8b597c0ac8036f2b88
author_id_fullname_str_mv f1fbd458e3c75d8b597c0ac8036f2b88_***_David Hughes
author David Hughes
author2 David Hughes
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container_title SAGE Research Methods Cases (Online Collection)
publishDate 2018
institution Swansea University
isbn 9781526431561
doi_str_mv 10.4135/9781526431561
publisher Sage
college_str Faculty of Medicine, Health and Life Sciences
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hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str School of Health and Social Care - Public Health{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}School of Health and Social Care - Public Health
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description This c'tale from the field' describes events affecting a study of an NHS panel responsible for deciding whether to fund high-cost drugs when the Local Health Board asked the researchers to release audio-recorded data because of an impending judicial review case. Judicial review involves the legal scrutiny of administrative decisions to decide whether they are lawful. The LHB's request raised ethical issues about whether the terms of research ethics committee approval had been respected and the position of subjects protected, but also issues concerning the university's and researchers' obligations. Various constraints arose from the Data Protection Act 1998, contractual obligations to the Department of Health as funder, and risks to the university and researcher arising from the impending court proceedings. The case describes how possible release of data was negotiated with the various stakeholders, the process via which subjects were asked to permit release, the position of the university administration and its legal advisors, and how data were eventually passed to the LHB. The chapter discusses the dilemmas that emerged, and how pressures from stakeholders make it very difficult for researchers to formulate a principled position not to release data. Lessons learned and possible solutions discussed, including whether risks need to be communicated more clearly to subjects and what steps can be taken to avoid holding compromising data.
published_date 2018-01-01T03:41:41Z
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score 11.016235

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