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Addressing ethnic disparities in neurological research in the United Kingdom: An example from the prospective
Daniel J van Wamelen1, Silvia Rota2, Monika Hartmann3
1Institute of Psychiatry, Psychology & Neuroscience; Department of Neuroimaging; King's College London, London, United Kingdom; Parkinson Foundation Centre of Excellence at King's College Hospital NHS Foundation Trust, and King's College London, United Kingdom; Radboud University Medical Center, Donders Institute for Brain, Cognition and Behaviour, Department of Neurology; Centre of Expertise for Parkinson & Movement Disorders, Nijmegen, the Netherlands; Institute of Psychiatry, Psychology & Neuroscience, Department of Basic & Clinical Neuroscience, Division of Neuroscience; King's College London, London, United Kingdom.
Background:
Minority ethnic groups have often been underrepresented in research, posing a problem in relation to external validity and extrapolation of findings. Here, we aimed to assess recruitment and retainment strategies in a large observational study assessing neurological complications following SARS-CoV-2 infection.
Methods:
Participants were recruited following confirmed infection with SARS-CoV-2 and hospitalisation. Self-reported ethnicity was recorded alongside other demographic data to identify potential barriers to recruitment.
Results:
807 participants were recruited to COVID-CNS, and ethnicity data were available for 93.2%. We identified a proportionate representation of self-reported ethnicity categories, and distribution of broad ethnicity categories mirrored individual centres' catchment areas. White ethnicity within individual centres ranged between 44.5% and 89.1%, with highest percentage of participants with non-White ethnicity in London-based centres. Examples are provided how to reach potentially underrepresented minority ethnic groups.
Conclusions:
Recruitment barriers in relation to potentially underrepresented ethnic groups may be overcome with strategies identified here.
