Abstract
Background: There is growing interest in using routinely collected administrative data for research purposes. Following the success of research using routinely collected healthcare data, attention has turned to leveraging routinely-collected non-health 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 non-health 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 non-health 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
There is growing interest in using routinely collected administrative data for research purposes
We provide this narrative in the hopes that it will inform researchers who are considering working with non-health administrative data, and that it will help to critically assess and improve current data governance and access policies
We hope that the narrative presented above, detailing the journey of a project through various stages of the necessary processes in Scotland, helps to highlight these challenges
Summary
Scottish Longitudinal Study Data Resource (Pre-linked administrative data) 2 previous project[8,9,10], the first step was to determine whether the ethics and permissions obtained previously could be extended to cover the proposed project. Data controllers could give conditional guarantees for data at the start of the permissions process, contingent on the research project acquiring ethical, public benefit and privacy approval While this process would still need to respond to changing procedures, it would give some level of certainty for researchers and would ensure accountability for any subsequent delays or failures to provide data. In order to resolve the capacity problem and to speed up processing requests it is imperative that organisations commit more and dedicated staff and infrastructure, and that their funding enables these developments This is not a new problem, and has been highlighted by previous initiatives in non-health administrative data[14]. The exception to this is perhaps in Scandinavian countries such as Sweden, in which health and non-health administrative data been utilised by researchers for much longer and data controllers are better provisioned for data requests
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