Synopsis

Social Determinants of Neurological Disease: Tackling Inequalities was held at the Preventive Neurology Unit at Queen Mary University of London on the 25th of November 2021. The symposium brought together researchers and healthcare professionals with an interest in the influence of social determinants on health outcomes. In a varied programme that included lectures and panel discussions, the event addressed knowledge gaps in the understanding of social determinants of neurological diseases, and highlighted lessons that can be learned from progress in addressing these factors in other disease areas.


Opening the meeting, Dr Ruth Dobson introduced data showing a higher risk of multiple sclerosis in Black, Asian and ethnic minorities (BAME), which is more likely associated with the higher prevalence of recognised social risk factors for multiple sclerosis, such as smoking status, across these groups [1]. She also presented data showing that a large number of excess dementia deaths in England and Wales are attributable to socioeconomic deprivation. Social determinants of health include non-medical factors that influence health outcomes, including educational level, poverty, geography, race and gender and Dr Dobson suggested that the symposium should prompt delegates to consider how inequalities in healthcare might manifest from a research perspective, including access to research for potential participants, questions about study results that are truly representative of the population and subsequent influences on clinical care.

comorbidities of epilepsy

The first half of the symposium focused on lessons that can be learnt from other diseases, including HIV and cancer screening. In this context, Dr Vanessa Apea (Barts Health NHS Trust) presented data from HIV research demonstrating an increased rate of late diagnosis of HIV infection in women, older age groups (aged 50+), people of Black African ethnicity and transgender individuals [2]. She then focused on how patient-centred care is the key in terms of moving past this injustice towards agency. Advocacy, active inclusion of all voices, active listening, using culturally appropriate resources and psychologically safe spaces, and ensuring health and research literacy could all help to engender agency. Dr Apea also touched on the matter of racism as a force determining the life of individuals from minority ethnic backgrounds and influencing the distribution of social determinants of health, and concluded that routinely monitoring for differential exposures, opportunities, and outcomes by race, exploring lived experiences and intersectional systems of discrimination, and ensuring diverse representation in research is crucial to tackle racism as a silent perpetuator of health inequalities [3].

Following Dr Apea’s lecture, Dr Samantha Quaife (Queen Mary University of London) described how socioeconomic inequalities lead to a disproportionate cancer burden among those who are more deprived, with socioeconomic gradients in cancer screening uptake exacerbating this discrepancy. Dr Quaife then expanded on behavioural science approaches that can be implemented to mitigate this problem, with particular emphasis on the social ecological model [3]. This argues that the only way to fully and holistically understand a problem is by comprehending the different levels or parts that constitute it. These include public policies, community factors, organisational, interpersonal and individual parameters. Focusing on what can be changed on an individual level, Dr Quaife presented the COM-B model, which proposes that there are three components to any behaviour (B): Capability (C), Opportunity (O) and Motivation (M). In order to perform a particular behaviour, one must feel that they are both psychologically and physically able to do so (C), have the social and physical opportunity for the behaviour (O), and want or need to carry out the behaviour more than other competing behaviours (M) [4]. As each of these components interact, interventions must target one or more of these in order to deliver and maintain effective behavioural change. Dr Quaife explained useful methods to target capability and opportunity in the field of cancer screening which can also be applied in the field of preventive neurology. These could include advanced notification and public campaigns to increase awareness of the importance and availability of disease screening, tailored communication to promote engagement with the screening scheme, as well as regular reminders, timed appointments, and use of simple tests to then facilitate compliance with lifelong screening [5].

Professor Carol Rivas (University College London) subsequently gave a comprehensive talk on the impact of intersectionalities on the care of people with chronic diseases. She defined health inequalities as systematic differences in the health of people occupying unequal positions in society [6]. She emphasised that multiple structural, contextual and individual factors determine social disadvantage and influence health experience, and their effect is not simply additive. None of these factors is a stand-in for any other and they are all necessary in generating adequate depictions of social inequalities in healthcare. In other words, social determinants of health intersect to create a mutually constituted vulnerability [7,8]. This stresses the need for an intersectional lens to be applied. Without this intersectional lens, important information may be obscured. Intersectionality can be divided into categories, including intra-categorical, whose aim is to make visible previously invisible group dynamics created by the perception of thinking of a group category as homogeneous; anti-categorical, which challenges intersectional relationships and notions of identity as fixed; and inter-categorical, which provisionally adopts existing analytical categories to document relationships of inequality [9]. To tackle ethnocentric determinants of healthcare inequalities, requires a rich longitudinal intersectional understanding of experiences of people from minorities and with chronic conditions or disabilities, and a focus on ensuring easy access to networks of emotional and practical support, health and social care, as well as vital resources, such as medicine and food. Specific attention was given to the role that lay co-researchers can play in understanding, inspiring trust and maintaining communication with study participants from different ethnic groups.

Following these talks, Dr Andrew Singleton (National Institutes of Health, USA) pointed to knowledge gaps in common neurological diseases due to a failure to reflect in research the diversity of people suffering from these diseases. This issue mainly arises from the traditional perception that disease entities are monolithic, thus limiting the importance of diversifying the basis of our understanding of disease. Collecting data from those who are already embedded in or readily available to the research pipeline is easier for researchers. However, unequal representation in research is not only a socially unfair phenomenon, but also a scientifically inefficient way to address global diseases. Differences in disease biology and genetics between demographic groups have the potential to deliver important insights into aetiology and treatment of neurological diseases. To address these problems the current focus should be on diversifying research. However, engaging new communities to research, both as study participants, but also as researchers executing the work, is challenging and requires new or modified infrastructure, and a commitment from funders to support efforts outside of the norm. Dr Singleton ended his talk by emphasising that the efforts towards diversification of research should target multiple levels, including genetics, genomics, biomarkers, clinical features, treatment response, disease pathology and cellular models.

The symposium raised important issues for clinicians and researchers working in the field of neurological disease. While there is evidence to show that the burden of major neurological diseases varies according to social factors such as ethnicity and socioeconomic status, these have largely been neglected in research and in the clinic. Progress in other common diseases provides a roadmap for us to begin to address this knowledge gap so that we can deliver representative translational research and effective clinical care across social, cultural and geographical boundaries.


References

  1. Dobson R, Jitlal M, Marshall CR, Noyce AJ, Robson J, Cuzick J, Giovannoni G. Ethnic and Socioeconomic Associations with Multiple Sclerosis Risk. Ann Neurol. 2020;87(4):599-608. https://doi.org/10.1002/ana.25688
  2. Kirwan PD, Hibbert M, Kall M, et al. HIV prevalence and HIV clinical outcomes of transgender and gender-diverse people in England. HIV Medicine 2021;22:131-139. https://doi.org/10.1111/hiv.12987
  3. Tervalon M, Murray-Garcia J. Cultural humility versus cultural competence. A critical distinction in defining physician training outcomes in multicultural education. Journal of Health Care for the Poor and Undeserved. 1998;9:117-125. https://doi.org/10.1353/hpu.2010.0233
  4. Kilanowski JF. Breadth of the Socio-Ecological Model, Journal of Agromedicine. 2017;22:4.  295-297. https://doi.org/10.1080/1059924X.2017.1358971
  5. Michie S, van Stralen MM, West R. The behaviour change wheel: a new method for characterising and designing behaviour change interventions. Implement Sci. 2011;6:42. https://doi.org/10.1186/1748-5908-6-42
  6. Graham H. Social determinants and their unequal distribution: clarifying policy understandings. Milbank Q 2004;82(1):101-24. https://doi.org/10.1111/j.0887-378X.2004.00303.x
  7. Nazroo JY. The structuring of ethnic inequalities in health: economic position, racial discrimination, and racism. Am J Public Health (2003), 93(2):277-84. https://doi.org/10.2105/AJPH.93.2.277
  8. Williams DR, Mohammed SA. Discrimination and racial disparities in health: evidence and needed research. J Behav Med (2009), 32(1):20-47. https://doi.org/10.1007/s10865-008-9185-0
  9. McCall, Leslie. “The Complexity of Intersectionality.” (2005) Signs, vol. 30, no. 3, The University of Chicago Press, pp. 1771-800 https://doi.org/10.1086/426800