TY - JOUR
T1 - Data protection, information governance and the potential erosion of ethnographic methods in health care?
AU - Lee, Rebecca
AU - McDonagh, Janet E.
AU - Farre, Albert
AU - Peters, S.
AU - Cordingley, L.
AU - Rapley, Tim
N1 - 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.
PY - 2022/1/1
Y1 - 2022/1/1
N2 - 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 health-care researchers. Compared with 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 health-care 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 was to equip researchers embarking on similar projects to be able to navigate the potentially problematic and complex journey to approval.
AB - 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 health-care researchers. Compared with 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 health-care 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 was to equip researchers embarking on similar projects to be able to navigate the potentially problematic and complex journey to approval.
KW - data protection
KW - ethnography
KW - health services research
KW - research governance
UR - http://www.scopus.com/inward/record.url?scp=85119652918&partnerID=8YFLogxK
U2 - 10.1111/1467-9566.13408
DO - 10.1111/1467-9566.13408
M3 - Article
SN - 0141-9889
VL - 44
SP - 211
EP - 217
JO - Sociology of Health & Illness
JF - Sociology of Health & Illness
IS - 1
ER -