We are back with our series Bridging the Gap! For each post, we are interviewing women in neuroscience to discuss the gaps and the health inequalities relating to different areas of neuroscience, as well as the exciting new research that is attempting to bridge these gaps. For our new article, we talked with Professor Ruth Dobson, consultant neurologist and researcher at the Wolfson Institute for Population Health, Queen Mary University of London. In our interview, Professor Dobson shared with us her experience working on Multiple Sclerosis and her interest in equality and diversity within this field.
Multiple Sclerosis (MS) is a chronic autoimmune disease that affects the brain and spinal cord, with no definitive cure. It is estimated that there are more than 150,000 people with MS in the UK alone (1), and over 2.8 million people diagnosed worldwide. Disease onset is usually between 20 to 40 years of age and the most common symptoms include, but are not limited to, difficulty walking, fatigue, blurred vision and spasms (see our post for MS Awareness week here). Any of these symptoms can occur in relapses or progressively worsen over time; either way, it can significantly impact quality of life. However, it is noteworthy that MS is also a highly heterogeneous disease, with symptoms and health outcomes varying across individuals. For example, in women, MS is three times more prevalent than in men and tends to develop at a younger age, significantly impacting female patients’ lives. Additionally, this disease was considered to affect mostly white people, however studies have suggested that it is more common in Black and Asian individuals than previously thought and it also tends to develop earlier and more aggressively in these populations (2,3). These disparities are driven, not only by genetic and environmental factors, but also by individual and structural social determinants - such as health care access, race, gender, sexuality and socioeconomic status. Still, little is known about their true effects on MS outcomes and how they potentially contribute to health disparities in MS. It is fundamental to address these issues to understand and treat the different developments of MS and its symptoms in people.
With her work on multiple sclerosis, Professor Ruth Dobson advocates for the necessity of removing biases in clinical and research practices and collecting real-world data that reflect the diversity of MS patients, their experiences and their unmet needs.
Can you tell me a bit about your background and your path to studying multiple sclerosis?
I am a clinician and, during my neurology training, I did a PhD looking at multiple sclerosis (MS), investigating why people develop MS and the risks of MS in people without a diagnosis. I think, during this experience, I really caught the ‘bug’ for research; I started really enjoying it and I decided I actually wanted research to be part of my career going forward. However, when I finished my PhD, it was quite hard to combine everything, so I went back to my clinical training, completed it and became a consultant neurologist. I then had the opportunity to move back to research and I have remained in it ever since, even though I still do clinical work.
What research projects are you working on at the moment?
I have a few projects, but in particular I am interested in inequalities. In terms of gender-based inequalities, I am working on pregnancy and MS. Multiple Sclerosis does not only affect more females than males, but it also tends to be diagnosed at an earlier age in the former, affecting people when they could be thinking about pregnancy and family planning. So I do quite a bit of work on drug safety and pregnancy and approaches to minimise the harm to both mother and baby.
I also conduct a project on how menopause can impact MS and the causes of MS during the life course. On the other hand, in terms of the wider social determinants of health, I do some research building on my PhD work, but in particular looking at MS in people from different ethnicities and backgrounds. I am interested in exploring the pathways of MS risks, not just in a single population but across multiple ones, investigating how social determinants of health might influence things like diagnosis and access to disease modifying therapy, have an impact on MS outcomes, and look at how the safety profiles of disease modifying therapies may change over time and with the background.
I work in East London, so diversity is what I see every day in my clinical work. In a way, we are very lucky with MS because we have all of these drugs that can work very well. However, not everyone has equitable access to diagnosis, specifically an early diagnosis, and medication, and that is a really big determinant of long-term health outcomes in all populations. It stems from the fact that someone’s background can be associated with a preconception in clinical care about the likelihood of them having MS, which then impacts downstream. You see it in the clinics, where, in an NHS service that is incredibly strained and struggles massively with capacity, people that had generally good or high social determinants of health were able to advocate for themselves, navigate healthcare services, and access treatments more promptly and report problems.
Looking at research and treatments in MS, what would you say are some of the most impactful disparities?
As mentioned before, I think a lot of disparities actually come down to how easily people can navigate and access the healthcare services and manage to stay in the system. It can be very challenging, especially when you have a disease that may leave very little physical signs but quite a lot of impact. We see again, and again, and again people with MS who visited health services multiple times before receiving a diagnosis, who felt they were not believed or trusted and had to keep banging on the door. So, I would say differences in accessing and navigating the healthcare system influence MS outcomes.
There are so many other challenges that people face, but I think that categorising people, according to factors they have potentially no control over, is not always very helpful. Instead, we should try to think more about how the services operate. For example, virtual appointments: for somebody who has low income, or poor access to the internet, and lives in digital poverty, accessing a video appointment is a massive barrier to healthcare. These sort of structural barriers that exist within the NHS may affect one group more than others and impact different health outcomes.
What can mitigate, in terms of research and clinical practices, such disparities?
I think we need to understand what the barriers are, and also start from the idea that one single design of healthcare is not going to work for everyone. From a research perspective, we should investigate, using both large data and individual qualitative work, what the structural barriers that people face actually are, how these manifest, what harm they can potentially cause and where they do so along a pathway. It is also important to enter this work with an open mind, without preconceptions of what characteristics can lead people to face barriers, but keeping in mind that they do not act independently. There is an incredibly complex web of different factors and aspects that can also be very situational and depend on the particular condition. Also, in terms of healthcare, I think that, to design services that better address disparities, there should be a range of solutions impacting different factors.
Do you see changes in practices that are moving towards these directions? And is there anything in particular that you see happening in the field of MS that particularly excites you?
I think it is very challenging for things to be happening with the NHS being so strained. However, there is an increasing research interest in the role of inequalities in health outcomes. What is interesting and fills me with hope, is the fact that if you go back 5 years, there was almost nothing happening in this area, but now it has become a major research priority and that brings the potential for translation into impact.
References:
MS Society. MS in the UK. https://www.mssociety.org.uk/what-we-do/our-work/our-evidence/ms-in-the-uk
Dobson, R., Rice, D.R., D’hooghe, M. et al. Social determinants of health in multiple sclerosis. Nat Rev Neurol 18, 723–734 (2022). https://doi.org/10.1038/s41582-022-00735-5
Neurology Academy. Understanding and mitigating health-related disparities in MS care. https://neurologyacademy.org/events/webinar/understanding-and-mitigating-health-related-disparities-in-ms-care (2023)
This article was written by Caterina Falvella and edited by Rebecca Pope, with graphics produced by Lilly Green. If you enjoyed this article, be the first to be notified about new posts by signing up to become a WiNUK member (top right of this page)! Interested in writing for WiNUK yourself? Contact us through the blog page and the editors will be in touch.
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