Increasing diversity in research

Much of what we currently understand about Parkinson’s has come from studies of affluent white populations. The East London Parkinson’s Disease project is working with the local Bengali community and other under-represented groups in the region to change this.

To fully understand how Parkinson’s develops, or impacts upon people’s lives, we need to hear from all people affected by Parkinson’s. But we know that research is often not representative of everyone’s experiences. Until we do this, care and new treatments may not be serving everyone in the community.

The East London Parkinson’s Disease (ELPD) project, based at Queen Mary University of London, is working to address this need to include more voices. In particular, they are working with people from the Bengali community in East London.

We spoke to Tahrina Haque and Dr Alastair Noyce to hear about the parts they play in the project.

Tahrina Haque is a Parkinson’s Disease Clinical Coordinator at Queen Mary University of London. She trained as a pharmacist in Bangladesh, and since 2019 has been working as a bilingual research assistant between Queen Mary University of London and Barts Hospital. Tahrina sees people with Parkinson’s in the clinic to help with their routine check up and assessments, but also works with the research team at Queen Mary University to help recruit participants for various research studies. Tahrina helped shape the Parkinson’s UK Race Equality in Research project from its inception in 2018.

Dr Alastair Noyce is a Consultant Neurologist at Barts Hospital and carries out research into neurology and neuroepidemiology at Queen Mary University of London. His research focuses on Parkinson’s, along with other neurodegenerative conditions, particularly looking at early identification of Parkinson’s and better understanding risk factors.

How did the East London Parkinson’s Disease project come about?

Alastair: Around 2017–2018 while working at Barts Health NHS Trust, it struck me that the Parkinson’s we were seeing in East London was often different to what’s widely documented and observed. What we know about Parkinson’s didn’t always apply here.

This is probably because the majority of studies outlining the features of Parkinson’s are biased in the way that they recruit and tend to over-represent white, well-educated, otherwise healthy people, from affluent areas.

So the East London Parkinson’s Disease project was set up to more formally record the experiences and features of Parkinson’s in this area. It started as a small study recruiting people with and without Parkinson’s, and monitoring their health over time. With the appropriate consent, this information then feeds into more specific research studies, such as those looking at problems with memory in people with Parkinson’s, or links between Parkinson’s and other conditions, such as diabetes.

In East London, there is a large Bengali community, particularly around the Tower Hamlets area close to the University. We wanted to make sure the local community was consulted about our work, so we needed someone who was close to the community to help facilitate this. This is where Tahrina came in…

Tahrina: I moved to London to study for my Master’s degree at Queen Mary University in 2018 and during that time was working as a delegate researcher for the East London Gene and Health study. In 2019, I joined as a bilingual research assistant for the East London Parkinson’s Disease project. Then in 2021 we received funding from Parkinson’s UK so that I could take on the role of Parkinson’s Clinical Coordinator. I still work as an honorary research assistant and assess participants for research.

My job now involves organising community information events to communicate more about Parkinson’s and what it means. I also assess people living with Parkinson’s by doing some of the standard tests that are involved in their normal care, such as cognitive assessments, motor assessments and biological sample taking. And I help explain how they can get involved in research, through projects such as the East London Parkinson’s Disease project.

Now, we have around 200 people with Parkinson’s involved with the project, as well as around 100 people who do not have the condition. What started as a small study has now become a much wider project with many different research questions being tackled.

Why is it important to include people with Parkinson’s from the Bengali and other underrepresented communities in this project?

Alastair: When we look at genetic studies, it’s becoming more and more clear that there are a variety of genes involved with Parkinson’s. It’s almost certain that the impact that genes have on Parkinson’s varies between people from diverse communities. Fortunately, our projects are linked to worldwide initiatives like the Global Parkinson’s Genetics Program (GP2) so we have a real chance to improve our understanding of genetic contributions to Parkinson’s in diverse groups.

We also know that the majority of clinical trials have been conducted in people from white backgrounds. Which means that it’s possible that medication, or our understanding of symptoms, or even the way we treat someone’s symptoms, is not appropriate for people from, say, the Bengali community.

Our research aims to understand the changes occurring in people with Parkinson’s from various backgrounds. What we know about Parkinson’s in the Bengali community currently is very limited. We have a long way to go.

What has your research shown so far?

Alastair: We’re looking at improving tests to assess changes in thinking and memory, whilst also looking to find things we can monitor, known as biomarkers, that can help us see how the condition changes over time.

Already, our work has uncovered fascinating insights, including risk factors and early symptoms related to Parkinson’s that had never been documented before. Looking back through healthcare records of people in the East London area, we were able to identify that a loss of hearing and epilepsy could be early indicators of Parkinson’s.

The East London Parkinson’s Disease project aims to build on this, and work with people with Parkinson’s now to monitor their symptoms and progression. We are collecting information about how motor and non-motor symptoms progress, how their cognitive assessment scores change over time, and even collecting small samples from skin, blood, saliva and spinal fluid to see if there are any clues to suggest why someone might have a particular set of symptoms.

Our work confirms that many of the symptoms and early features of Parkinson’s can occur long before a diagnosis. If we’re able to diagnose Parkinson’s earlier, we have a real opportunity to intervene early and offer treatments that could improve quality of life for people living with Parkinson’s. And perhaps, we’d be in a position to slow down or cure the condition in the future.

How can researchers increase diversity in Parkinson’s research?

  • Recruit diverse clinical coordinators and researchers who reflect the underrepresented communities.
  • Develop relationships with communities over the long term.
  • Engage with communities early to make sure the research questions we are asking are things that the community really wants to see addressed.
  • Go beyond translating clinical tests and resources by also making sure they are culturally appropriate.
  • Have open lines of communication to ensure people can discuss their concerns about taking part.

How do you use your skills to encourage people to take part in this research?

Tahrina: It’s more than just being able to communicate with people in Bengali. Although obviously, that does help. When I first joined the team, people with Parkinson’s from the Bengali community were asked to fill in medical assessments in English. People didn’t always understand the tests they were being asked to complete, so it was difficult to know if we were getting an accurate assessment of how they were doing.

I translated one of the assessments we use most often, the Montreal Cognitive Assessment, into Bengali. But even then, people are still being asked to do things that are not always familiar to them. Things like writing with a pen and paper, or identifying animals during a cognitive assessment that they might never have come across before. By adapting these tests to better suit all patients, we’d have a much better idea of how the condition is progressing.

I also have a connection to the community that we are trying to serve, that’s not forced or unnatural. If we need to contact people via the Mosque for example, I know who to get in touch with or the best way in. I already have these relationships and established trust, and this takes time.

This trust has been invaluable when encouraging people to take part in the various studies connected to the project.

What insights can you share about attitudes to Parkinson’s and research in the Bengali community?

Tahrina: It’s interesting, because in the Bengali community, Parkinson’s is not recognised as a medical condition. People think that it’s just part of getting old, and don’t realise that there are treatments, or things that we can do to make them feel better. Even in my own family, I can see people with symptoms of Parkinson’s who don’t recognise that they could be treated. There is a lot to do to improve understanding of the condition in general.

It can also be challenging to convince people to get involved in research, as it can be such an unfamiliar subject. Many people I talk to are not familiar with research, or don’t have any experience of what it might involve. Some think that we will be asking for money from them, or giving them medications that they don’t need. Or they are afraid of taking part, and don’t see any benefit to them doing so.

This is part of why it is so important that we make sure the research questions we are asking are things that the community really wants to see addressed. Rather than us as outsiders just deciding what we think we should be looking at.

How do you think we can encourage more diversity in Parkinson’s research studies?

Alastair: At the beginning of this project, when we first had the idea, we tried to get funding from 5 or 6 different places and each one turned us down. Since then, we’ve seen the field grow and grow, with more people reaching out to us to ask for advice on how to improve diversity within their studies. We’re often being asked by other researchers or pharmaceutical companies if they can recruit participants from our project, as it’s so diverse.

Eyes are opening, but there is still resistance in some sectors of funding and research. Now, we need to convince those people of the value and importance of increasing diversity in research. I would encourage others to involve the community around them, making sure that what they intend to do really meets the needs of the people that they serve.

Read more about our Race Equality in Research work here.

Join our Race Equality in Research steering group

We’re looking for people with Parkinson’s and their family, friends and carers, as well as researchers, professionals and community leaders from Black, Asian or Mixed Race backgrounds to join this project steering group. This group will use their lived experience to shape and guide this important work.