Navigating data governance approvals to use routine health and social care data to evidence the hidden population with severe obesity: a case study from a clinical academic's perspective

Williamson, K. , Nimegeer, A. and Lean, M. (2022) Navigating data governance approvals to use routine health and social care data to evidence the hidden population with severe obesity: a case study from a clinical academic's perspective. Journal of Research in Nursing, 27(7), pp. 623-636. (doi: 10.1177/17449871221122040)

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Abstract

Background: Front-line professionals are uniquely placed to identify evidence gaps and the way routinely-collected data can help address them. This knowledge can enable incisive, clinically-relevant research. Aim: To document an example of the real-world approvals journey within the current NHS/Higher Education regulatory landscape, from the perspective of an experienced nurse undertaking doctoral study as a clinical academic. Methods: An instrumental case-study approach is used to explore the approvals process for a mixed-methods study. Relevant context is highlighted to aid understanding, including introduction of the General Data Protection Regulation and the integration of health and social care services. Results: Formal approvals by nine separate stakeholders from four different organisations took nearly 3 years, including 15 initial or revised applications, assessments or agreements. Obstacles included: conflicting views on what constitutes ‘research’ or ‘service evaluation’; isolated decision-making; fragmented data systems; multiple data controllers and a changing data governance environment. The dual perspectives of being both clinician and academic using routine data are explored. Conclusions: Practitioners face a complex approvals process to use data they routinely collect, for research or evaluation purposes. Use of data during the COVID-19 pandemic has demonstrated the need for streamlining of data governance processes. Practical recommendations are outlined.

Item Type:Articles
Status:Published
Refereed:Yes
Glasgow Author(s) Enlighten ID:Nimegeer, Dr Amy and Lean, Professor Michael and Williamson, Kath
Authors: Williamson, K., Nimegeer, A., and Lean, M.
College/School:College of Medical Veterinary and Life Sciences > School of Medicine, Dentistry & Nursing
College of Medical Veterinary and Life Sciences > School of Health & Wellbeing > MRC/CSO SPHSU
Journal Name:Journal of Research in Nursing
Publisher:SAGE Publications
ISSN:1744-9871
ISSN (Online):1744-988X
Published Online:15 November 2022
Copyright Holders:Copyright © 2022 The Authors
First Published:First published in Journal of Research in Nursing 27(7): 623-636
Publisher Policy:Reproduced under a Creative Commons License

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Project CodeAward NoProject NamePrincipal InvestigatorFunder's NameFunder RefLead Dept
727671Informing Healthy Public PolicyPeter CraigMedical Research Council (MRC)MC_UU_12017/15HW - MRC/CSO Social and Public Health Sciences Unit
3048231Complexity in healthSharon SimpsonMedical Research Council (MRC)MC_UU_00022/1HW - MRC/CSO Social and Public Health Sciences Unit
727671Informing Healthy Public PolicyPeter CraigChief Scientist Office (CSO)SPHSU15HW - MRC/CSO Social and Public Health Sciences Unit