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

Author:

Williamson Kath1ORCID,Nimegeer Amy2,Lean Mike3

Affiliation:

1. NRS Clinician (NHS Lothian), Doctoral Student, Department of Human Nutrition, School of Medicine, Dentistry and Nursing, University of Glasgow, Glasgow, UK

2. Research Associate (MRC/CSO Social and Public Health Sciences Unit), University of Glasgow, Glasgow, UK

3. Professor of Human Nutrition, Department of Human Nutrition, School of Medicine, Dentistry and Nursing, University of Glasgow, Glasgow, UK

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.

Publisher

SAGE Publications

Subject

Research and Theory

Reference34 articles.

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4. Burgess L (2016) Integration of health and social care: SPICe briefing 16/70. Available at: https://archive2021.parliament.scot/ResearchBriefingsAndFactsheets/S5/SB_16-70_Integration_of_Health_and_Social_Care.pdf (accessed 24 September 2022).

5. null

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