Inequalities in the Clinical Neurosciences

Molecular & Clinical Science Research Institute, St George’s, University of London and Department of Neurology, St George’s University Hospitals NHS Foundation Trust, London, UK.

Over 16 million people live with a neurological condition in England alone. We know that the experience of neurological illness isn’t shared equally across the population. In east London, Black people have a 43% and South Asian people a 17% increased risk of dementia compared to White people [1]. Across England and Wales over 20% of dementia deaths are attributable to deprivation [2]. In the UK, people from racially minoritised backgrounds have strokes 5-10 years earlier than White people and are 2.5 times more likely to die in hospital following an acute stroke [3,4]. Stroke incidence, mortality and misdiagnoses rates are all higher in women than in men [5]. Worldwide, women are 13% less likely to receive thrombolysis for ischaemic stroke [6]. In a US study, women with Parkinson’s disease waited longer to be referred for specialist care than men [7].

These disparities require an urgent response from the biomedical research, healthcare, and public health communities. The field of mental health has long been grappling with these issues, yielding an increasingly rich literature [8,9 for recent examples]. Nevertheless, inequalities in patient experience and outcomes persist [10]. The psychological profession is beginning to come to terms with its contribution to racist ideas and science [11]. However, discussion of how and why race, class, gender, sexuality and other structural imbalances in power affect neurological health, let alone how to tackle these, has been more muted, with some recent exceptions [12-14].

The problem exists not only in clinical care but also in knowledge production. Functional neurological disorder was historically framed as a consequence of moral failure in women, an attitude that remains prevalent today [15]. Despite being disproportionately affected, women are under-represented in stroke clinical trials [16]. Research studies rarely consider both sex and gender, leading to a dearth of knowledge regarding health outcomes for transgender people with neurological conditions.

Clinical neuroscience research systematically excludes and/or pathologises people from racially minoritised communities [17]. In the much-lauded recent studies of amyloid-lowering drugs in Alzheimer’s disease, less than 3% of participants were Black [18,19].

These disparities in knowledge production and clinical outcomes do not necessarily occur because individuals hold racist, sexist or other forms of prejudiced opinions. They are produced by the society and world in which we all live, which is structured by coloniality, patriarchy, heteronormativity, cisnormativity and ableism. This presents, whether openly or subliminally, the white, usually male, able body as the ultimate state of wellbeing. Returning sick white bodies to health is the primary objective of Western medicine; the white male body (or brain) is therefore understood as the most legitimate subject of biomedical research. The onus is on us as neuroscience researchers and/or clinicians to show in what way our work does not reproduce these hierarchies.

It is with these challenges in mind that we are holding a one-day conference on structural inequalities in the clinical neurosciences. The event was conceived as a teaching day for our new MSc in Clinical Neuroscience Practice (Clinical Neuroscience Practice (sgul.ac.uk)) but as we developed the programme we realised that it was too important to be offered to our students alone.

We have been very lucky to secure contributions from internationally-recognised experts in the field. Alana Lentin, from the University of Western Sydney and author of Why Race Still Matters [20], will kick us off with a talk about the work that race does in maintaining white supremacy, which as we have seen, still orders neuroscience care and research. Thushari Welikala from St George’s, University of London, will introduce us to coloniality and its effects, drawing on her own experiences in Sri Lanka. Ruth Dobson from Queen Mary’s, University of London, will discuss gender inequality in neurological research. Beck Hickman from St George’s, University of London, will contribute thoughts on the intersection between sexuality and gender identity and healthcare.

Our event is located in London, England, a city and society deeply divided by economic inequality, but nevertheless situated within the global North. The interplay in healthcare between the global North and South reflects the colonialism that gave rise to this international system of domination in the first place e.g., the use of patents to prevent poorer countries manufacturing their own medicines. However, there are exceptions, which we might characterise as acts of resistance, in which innovation in the global South results in improved health outcomes and knowledge that can benefit everyone. We will hear about this from Matthew Harris from Imperial College London, author of Decolonizing Healthcare Innovation: Low-Cost Solutions from Low-Income Countries [21].

All of us face the consequences of climate change, but we are not equally affected by them. Juliette Brown from East London NHS Foundation Trust, an old age psychiatrist and climate activist, will tease out the intersections between neuroscience and disparities in vulnerability to the climate catastrophe.

Oliver Rollins from Washington University, author of Conviction: the Making and Unmaking of the Violent Brain [22], and a recent call for an anti-racist neuroscience [23], will draw together the themes of the day and inspire us to imagine a decolonised future in which disparities in neuroscience research and care have been overcome. This will be followed by a panel discussion and networking event.

References

1. Bothongo PLK, Jitlal M, Parry E, et al. 2022. Dementia risk in a diverse population: A single-region nested case-control study in the East End of London. Lancet Reg Health Eur. 15:100321. https://doi.org/10.1016/j.lanepe.2022.100321

2. Jitlal M, Amirthalingam GNK, Karania T, et al. 2021. The Influence of Socioeconomic Deprivation on Dementia Mortality, Age at Death, and Quality of Diagnosis: A Nationwide Death Records Study in England and Wales 2001-2017. J Alzheimers Dis. 81(1):321-328. https://doi.org/10.3233/JAD-210089

3. Gulli G, Rutten-Jacobs LC, Kalra L, Rudd AG, Wolfe CD, Markus HS. 2016. Differences in the distribution of stroke subtypes in a UK black stroke population – final results from the South London Ethnicity and Stroke Study. BMC Med. 14:77. https://doi.org/10.1186/s12916-016-0618-2

4. Fluck D, Fry CH, Gulli G, et al. 2023. Adverse stroke outcomes amongst UK ethnic minorities: a multi-centre registry-based cohort study of acute stroke. Neurol Sci. 44(6):2071-2080. https://doi.org/10.1007/s10072-023-06640-z

5. Newman-Toker DE, Moy E, Valente E, Coffey R, Hines AL. 2014. Missed diagnosis of stroke in the emergency department: a cross-sectional analysis of a large population-based sample. Diagnosis (Berl). 1(2):155-166. https://doi.org/10.1515/dx-2013-0038

6. Strong B, Lisabeth LD, Reeves M. 2020. Sex Differences in Iv Thrombolysis Treatment for Acute Ischemic Stroke: A Systematic Review and Meta-Analysis. Neurology 95(1):e11-e22. https://doi.org/10.1212/WNL.0000000000009733

7. Saunders-Pullman R, Wang C, Stanley K, Bressman SB. 2011. Diagnosis and referral delay in women with Parkinson’s disease. Gend Med. 8(3):209-17. https://doi.org/10.1016/j.genm.2011.05.002

8. Anglin DM, Ereshefsky S, Klaunig MJ, et al. 2021. From Womb to Neighborhood: A Racial Analysis of Social Determinants of Psychosis in the United States. Am J Psychiatry. 178(7):599-610. https://doi.org/10.1176/appi.ajp.2020.20071091

9. Devonport TJ, Ward G, Morrissey H, et al. 2023. A Systematic Review of Inequalities in the Mental Health Experiences of Black African, Black Caribbean and Black-mixed UK Populations: Implications for Action. J Racial Ethn Health Disparities. 10(4):1669-1681. https://doi.org/10.1007/s40615-022-01352-0

10. Centre for Mental Health. 2020. Inequalities in mental health; the facts. https://www.centreformentalhealth.org.uk/sites/default/files/publication/download/CentreforMH_Inequalities_Factsheet.pdf (accessed 6th October 2023)

11. American Psychological Association. 2021. Apology to People of Color for APA’s Role in Promoting, Perpetuating, and Failing to Challenge Racism, Racial Discrimination, and Human Hierarchy in U.S. https://www.apa.org/about/policy/racism-apology

12. Dobson, R., Rice, D.R., D’hooghe, M. et al 2022a. Social determinants of health in multiple sclerosis. Nat Rev Neurol 18, 723-734. https://doi.org/10.1038/s41582-022-00735-5

13. Dobson R, Marshall C, Noyce A. 2022b. Social determinants of neurological disease: tackling inequalities. Lancet Neurol 21(2), 122-123. https://doi.org/10.1016/S1474-4422(22)00005-9

14. Griffith DM, Towfighi A, Manson SM, Littlejohn EL, Lesli E. Skolarus LE. 2023. Determinants of Inequities in Neurologic Disease, Health, and Well-being. The NINDS Social Determinants of Health Framework. Neurology 101 (7 Supplement 1), S75-S81; https://doi.org/10.1212/WNL.0000000000207566

15. McLoughlin C, Hoeritzauer I, Cabreira V, et al. 2023. Functional neurological disorder is a feminist issue. J Neurol Neurosurg Psychiatry 94:855-862. https://doi.org/10.1136/jnnp-2022-330192

16. Carcel C, Reeves M. 2021. Under-Enrollment of Women in Stroke Clinical Trials: What Are the Causes and What Should Be Done About It? Stroke 52(2):452-7. https://doi.org/10.1161/STROKEAHA.120.033227

17. Ricard JA, Parker TC, Dhamala E. et al. 2023. Confronting racially exclusionary practices in the acquisition and analyses of neuroimaging data. Nat Neurosci 26, 4-11. https://doi.org/10.1038/s41593-022-01218-y

18. van Dyck CH, Swanson CJ, Aisen P, Bateman RJ, Chen C et al. 2023. Lecanemab in Early Alzheimer’s Disease. N Engl J Med 388:9-21. https://doi.org/10.1056/NEJMoa2212948

19. Sims JR, Zimmer JA, Evans CD, et al. 2023. Donanemab in Early Symptomatic Alzheimer Disease: The TRAILBLAZER-ALZ 2 Randomized Clinical Trial. JAMA 330(6):512-527. https://doi.org/10.1001/jama.2023.13239

20. Lentin A. 2020. Why Race Still Matters. Wiley

21. Harris M. 2023. Decolonizing Healthcare Innovation: Low-Cost Solutions from Low-Income Countries. Routledge. https://doi.org/10.4324/9781003301561

22. Rollins O. 2021a. Conviction: The Making and Unmaking of the Violent Brain. Stanford University Press, Stanford. https://doi.org/10.1515/9781503627901

23. Rollins, O. 2021b. Towards an antiracist (neuro)science. Nat Hum Behav 5, 540-541. https://doi.org/10.1038/s41562-021-01075-y