“Black individuals don’t get as much time with doctors, studies show”
Author: Dayne Beccano-KellyPublished: 23 July 2020
Prep: Cook: Serves:
Dayne Beccano-Kelly shares his experience as a black professional working in Parkinson’s research, explains why visibility and education are the key to increasing diversity – and how unrepresentative studies and a lack of information are failing black people with Parkinson’s around the world
I describe my work as a researcher as like a telephone conversation that I’m listening into. For people with Parkinson’s, the line gets a bit faulty. I’m trying to see what causes the messages to change so that we can clean up the line.
I spend a lot of time in a lab here at Oxford University, however I do try to see individuals living with Parkinson’s, too. We have a Parkinson’s group doing outreach and funding. We also host Oxford Parkinson’s Disease Centre day, where we organise talks and bring together collaborators, independent scientists, carers and people with Parkinson’s. This always really puts what I’m doing into perspective.
As a researcher, it’s important to have a cold scientific approach so as not to be biased – but I think it’s vitally important to remember that while you cannot be completely emotionally driven, you must remember that the money we are spending is going towards finding something to help.
“They looked at my skin colour before talking to me”
I’ve worked in two principalities across four different countries, and I’ve never encountered a senior black member of academic staff in neuroscience within my departments.
I’ve been told by professionals in my field that I was there because of positive discrimination. It’s very hard to be told that, but you have to remind yourself ‘no, that’s not true’. They looked at my skin colour before talking to me and decided that I must be in my position because of the colour of my skin. That’s racism.
I believe that there are two key things that you can do to promote BAME (black, Asian and minority ethnic) individuals in STEM (science, technology, engineering and mathematics): visibility and education. Telling students from an early age, ‘you are capable of getting there’. Raising the issue, talking to everybody in the room – not just the black students – and making them fully aware that you can begin to end the problem with your generation.
Dayne Beccano-Kelly is a career development fellow in Neurobiology at the University of Oxford, UK
“It’s important for the black community that we’re informed enough”
Disorders like ALS (amyotrophic lateral sclerosis), MS (multiple sclerosis) and essential tremors have all been shown to have different levels of prevalence and incidence – as well as a wide range of symptoms – within different ethnic groups. But there has not been enough research into how Parkinson’s affects individuals from different ethnic groups. While some studies suggest black individuals are less likely to get Parkinson’s than Caucasian western individuals, others may indicate it is equal.
There has been instances where it has been proven that in African and West Indian communities, individuals tend not to go to the doctors enquiring about Parkinson’s because they only experience non-motor symptoms. By not manifesting typical Parkinson’s features, they may be treated for something else, meaning it takes them longer to receive the treatment they really need.
In certain parts of the world, it’s common for black patients to not get as much time with doctors, and for their symptoms to be deemed milder than somebody of Caucasian descent. We need more global information about Parkinson’s in those underserved groups. It’s important for the black community that we’re informed enough to notice these non-motor symptoms and seek help.
“Diversity needs to become normative”
Parkinson’s studies are biased towards people of Caucasian descent. We need to address that fact and keep pressing forward with recruiting more BAME individuals into the research. Parkinson’s organisations need to be a part of that – diversity needs to become normative.
We must see that there is a disparity in what researchers are sampling; check the ethnic groups present and break research down to realise that we can’t draw a conclusion because there are simply not enough black people.
Having more information will help us help people with Parkinson’s, and that means when they come to the doctor they won’t be turned away, not because of the colour of their skin, but because they don’t believe that they’re presenting symptoms in the way that they would expect.
There is this issue across the board with BAME treatment. Whether it be in the workplace or care, there needs to be acknowledgement coupled with action.
Lead image: Dayne Beccano-Kelly
Need to know
Dayne Beccano-Kelly is a career development fellow in Neurobiology at the Department of Physiology, Anatomy and Genetics, University of Oxford. He completed his undergraduate degree and PhD at the University of Leeds, UK, before undertaking postdoctoral research in Dundee, UK, and Vancouver, Canada.
For more information on the latest Parkinson’s research please visit the EPDA website.
Whatever happened to stem cells? Tune in to this free MJFF live webinar
Free webinar looks at the stem cells and its use in Parkinson's
6 days ago
Researchers have finally identified brain cells linked to Parkinson’s disease
For decades, scientists have known that Parkinson’s is associated with the death of dopamine-producing cells in the brain. Now, researchers from the Broad Institute of MIT and Harvard, US, have discovered the specific subtype of brain cells that die in Parkinson’s disease. Using a technique called single-cell RNA signalling, which enables the individual analysis of cells within a tissue for activity and protein production, researchers identified 10 subtypes of dopamine-producing cells within the donated brains of people who died from causes unrelated to Parkinson’s. The team carried out the same investigation on people who had died with Parkinson’s or a condition with similar symptoms called Lewy body dementia. They discovered that only one subtype of the cells had reduced in number – which suggests many of these cells had died while the people were living. It is hoped that the findings could lead to better understanding of Parkinson’s causes and…
Tiny DBS implant shows potential to advance Parkinson’s disease treatment
In an innovative trial by North Bristol NHS Trust, UK, surgeons have succeeded in implanting a tiny deep brain stimulation (DBS) device into a person’s skull. Their aim? To address symptoms of Parkinson’s. Designed with a tiny battery system that is inserted into the skull, the DBS device delivers electric impulses to targeted areas of the brain through electric probes. In doing so, it works to address abnormal brain cell activity associated with Parkinson’s – and may help to ease symptoms. One of around 25 patients selected for the year-long trial has described the device’s impact as “amazing”. Commenting on the results of the trial so far, consultant neurologist Dr Alan Whone of North Bristol NHS Trust said: “We are hopeful that if these findings hold up, we will have a significant technical advance by which to improve Parkinson’s care across the world.”
Could a specialised smartwatch support people with Parkinson’s disease?
A specialised smartwatch, which could help those living with Parkinson’s to better manage their condition, will be rolled out to thousands of people in England. The Parkinson’s Kinetigraph, developed by the National Health Service (NHS) in Plymouth and the University of Plymouth, UK, contains sensors designed to monitor the wearer’s activity and buzz with medication reminders. Data collected from the watch – which detects excessive movement, immobility and sleep disturbances – is shared with healthcare providers, allowing for improvements to physiotherapy and prescriptions based on patient needs. Commenting on the smartwatch’s launch, NHS England chief executive Amanda Pritchard said: “Not only is it better for these people living with Parkinson’s, but it is also more efficient for the NHS, freeing up space and time in hospitals for our hard-working staff.” UK health secretary Sajid Javid, meanwhile, described the Kinetigraph as a “fantastic example of how technology is driving cutting-edge innovation…