Routinely collected patient data in neurology research: a systematic mapping review
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RESEARCH ARTICLE
Open Access
Routinely collected patient data in neurology research: a systematic mapping review Fran Biggin1, Hedley C. A. Emsley1,2*
and Jo Knight1
Abstract Background: This review focuses on neurology research which uses routinely collected data. The number of such studies is growing alongside the expansion of data collection. We aim to gain a broad picture of the scope of how routine healthcare data have been utilised. Methods: This study follows a systematic mapping review approach which does not make a judgement on the quality of the papers included in the review, thereby enabling a complete overview of the field. Results: Of 4481 publications retrieved, 386 met the eligibility criteria for this study. These publications covered a wide range of conditions, but the majority were based on one or only a small number of neurological conditions. In particular, publications concerned with three discrete areas of neurological practice - multiple sclerosis (MS), epilepsy/seizure and Parkinson’s disease - accounted for 60% of the total. MS was the focus of the highest proportion of eligible studies (35%), yet in the recent Global Burden of Neurological Disease study it ranks only 14th out of 15 neurological disorders for DALY rates. In contrast, migraine is the neurological disorder with the highest ranking of DALYs globally (after stroke) and yet it was represented by only 4% of eligible studies. Conclusion: This review shows that there is a disproportionately large body of literature pertaining to relatively rare disorders, and a correspondingly small body of literature describing more common conditions. Therefore, there is potential for future research to redress this balance. Keywords: Neurology, Routinely collected data, Electronic health record
Background The global burden of neurological disorders is increasing [1]. The Global Burden of Disease neurology collaborators reported that there has been a 39% increase in deaths due to neurological disorders between 1990 and 2016 [2]. Alongside this increase in the burden of disease, there is a predicted future shortfall in the US neurology workforce [3], and in the UK there is considerable concern surrounding services for people with * Correspondence: [email protected] 1 Lancaster University Faculty of Health and Medicine, Furness College, Lancaster University, Bailrigg, Lancaster LA1 4YG, England 2 Lancashire Hospitals NHS Foundation Trust, Department of Neurology, Royal Preston Hospital, Sharoe Green Lane, Fulwood, Preston PR2 9HT, England
neurological disorders [4–6]. A 2011 report by the UK National Audit Office (NAO) highlighted issues including delays in diagnosis, geographical inequalities in access to care; and a lack of good quality data [6]. Neurology is a large and diverse area of medicine with a correspondingly wide and varied body of research literature. Current neurology practice is heavily informed by the evidence provided by research, and the development of a focus on evidence based practice has been widely reported [7
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