Navigating the landscape of administrative data in Scotland

Matthew H Iveson,Ian J Deary

doi:10.12688/wellcomeopenres.15336.1

Abstract

Background: There is growing interest in using routinely collected data for research purposes. Following the success of research using routinely collected healthcare data, attention has turned to leveraging administrative data derived from systems providing other services to the population (e.g., education, social security) to conduct research on important social problems. In Scotland, specialised organisations have been set up to support researchers in their pursuit of using and linking administrative data. The landscape of administrative data in Scotland, however, is complex and changeable, and is often difficult for researchers to navigate. Purpose: This paper provides a researcher's narrative of the steps required to gain the various approvals necessary to access and link administrative data for research in social and cognitive epidemiology. Findings: This paper highlights the problems, particularly regarding the length and complexity of the process, which researchers typically face, and which result in a challenging research environment. The causes of these problems are discussed, as are potential solutions. Conclusions: Whereas the potential of administrative data is great, more work and investment are needed on the part of all those concerned - from researchers to data controllers - in order to realise this potential.

Highlights

The rise of big data represents a revolutionary opportunity for both researchers and policy makers
We provide this narrative in the hopes that it will inform researchers who are considering working with administrative data, and that it will help to critically assess and improve current data governance and access policies
After several weeks of meetings and emails with colleagues in the Administrative Data Research Centre – Scotland (ADRC-S), NHS Information Services Division (NHS ISD), ACCORD, and the NHS Research Ethics Committee (NHS REC), it was determined that new specialised approvals would need to be sought

Summary

Introduction

The rise of big data represents a revolutionary opportunity for both researchers and policy makers. Researchers have extended their sights to routinely collected administrative data, such as that from the Scottish Government, as a largely untapped resource with similar potential for impact and societal benefit These requests have been facilitated by purpose-built organisations such as the Administrative Data Research Centre Scotland (funded by the ESRC). The narrative describes and comments on a project devised to link the Scottish Mental Survey 1947 cohort (SMS1947)[11] to routinely collected administrative data, including the Scottish Census This follows on from and extends similar efforts to link the same cohort to routinely-collected health data, carried out before major changes in the Scottish landscape of big data[8,9,10,12]. The SLS studies were conceived as interim studies to be conducted while completing the approvals process for the two census studies, and are included for comparison Gantt chart demonstrating the time taken to complete key stages for each project

Ethical Approval

Conclusion

Findings

14. Medical Research Council