Data protection, information governance and the potential erosion of ethnographic methods in healthcare?

Lee, J. E., Farre, A., Peters, S., Cordingley, L. and Rapley, Tim (2021) Data protection, information governance and the potential erosion of ethnographic methods in healthcare? Sociology of Health and Illness. pp. 1-7. ISSN 0141-9889 (In Press)

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Official URL: https://doi.org/10.1111/1467-9566.13408

Abstract

With the most recent developments to the European General Data Protection Regulations (GDPR) introduced in May 2018, the resulting legislation meant a new set of considerations for study approvers and healthcare researchers. Compared to previous legislation in the UK (The Data Protection Act, 1998), it introduced more extensive and directive principles, requiring anybody ‘processing’ personal data to specifically define how this data will be obtained, stored, used and destroyed. Importantly, it also emphasised the principle of accountability, which meant that data controllers and processors could no longer just state that they planned to adhere to lawful data protection principles, they also had to demonstrate compliance. New questions and concerns around accountability now appear to have increased levels of scrutiny in all areas of Information Governance (IG), especially with regards to processing confidential patient information. This article explores our experiences of gaining required ethical and regulatory approvals for an ethnographic study in a UK healthcare setting, the implications that the common law duty of confidentiality had for this research, and the ways in which IG challenges were overcome. The purpose of this article is to equip researchers embarking on similar projects to be able to navigate the potentially problematic and complex journey to approval.

Item Type: Article
Additional Information: Funding information: The views expressed herein are those of the authors and not necessarily those of the National Health Service, the National Institute for Health Research, or the UK Department of Health. This work was supported by a Foundation Fellowship award from Versus Arthritis (Grant 12794). Aspects of this work were also supported by funding from the Centre for Epidemiology Versus Arthritis (Grant 20380), the NIHR Manchester Biomedical Research Centre. Contributions by Tim Rapley were supported by the National Institute of Health Research (NIHR) Applied Research Collaboration (ARC) for the North East and North Cumbria (NENC). Tim Rapley is a deputy theme lead for ‘Enabling Methodologies’ within the NIHR Applied Research Collaboration for the North East and North Cumbria.
Uncontrolled Keywords: Health services research, data protection, research governance, ethnography
Subjects: B900 Others in Subjects allied to Medicine
G500 Information Systems
L700 Human and Social Geography
Department: Faculties > Health and Life Sciences > Social Work, Education and Community Wellbeing
Depositing User: John Coen
Date Deposited: 04 Nov 2021 12:56
Last Modified: 26 Nov 2021 11:30
URI: http://nrl.northumbria.ac.uk/id/eprint/47633

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