The unheard, unseen, and uncorrected effects of COVID-19
Here’s an important question: do you think the pandemic has impacted people’s willingness to participate in clinical trials? With the media giving COVID-19 so much attention over the last year, it’s really important that we consider how it’s affected people’s perceptions of clinical trials. The disproportionate effects of the pandemic have been highlighted amongst ethnic minorities, so is it likely that ethnic minorities will be more worried about participating? And could this exacerbate inequalities in representation in COVID-19 clinical trials?
These are all key questions that moving forward as an industry, we have to consider. So, let’s take a deep dive into the insights from our recent research project to see what’s been said in these communities.
Insights into ethnic minorities biggest concerns
The aims of this research were to help understand the perceptions of the pandemic across ethnic groups, to help identify and raise awareness of the varied concerns and impacts across these groups, and to understand whether this hindered people’s willingness to participate in COVID-19 vaccine clinical trials. So, we put a focus on recruiting participants from a range of ethnic backgrounds and included a large proportion of key workers. Here’s a breakdown of the participants that took part:
Breakdown of participants into ethnic groups:
37.5% white participants
36.5% Asian/Asian British participants
14.8% Black/African/Caribbean/Black British participants
4.6% Mixed/Multiple ethnic groups participants
2.4% Middle Eastern participants
4.1% participants that identified as other
There are higher levels of concern over COVID-19 in ethnic minority communities
All participants were asked to rate their level of concern about COVID-19 on a scale of 1 to 7, with 1 being not at all, and 7 being extremely concerned.
Across all ethnic groups, 7 was the most common rating, with 34.6% of people saying they are extremely concerned about COVID-19.
However, when comparing between ethnic minority groups and white people, it was clear that many more people from ethnic minority backgrounds were worried about COVID-19, with around 40% giving the highest score of 7, compared to around 26% of white people.
Now it’s understood that ethnic minority groups are more worried about COVID-19, it’s important to understand why this is.
Why are people from ethnic minority groups more concerned about COVID-19?
Firstly, key workers have been more severely affected by the pandemic. From our survey, 25% of key workers had COVID-19, in comparison to 10% of the total number of people who took part. Likewise, 46% of participants from Black/African/Caribbean/Black British backgrounds worked as key workers, in comparison to 16% of white people. This means that more people from ethnic minority groups work in jobs that have a higher risk of getting the virus. Knowing this, it’s no wonder there is more concern surrounding COVID-19 in ethnic minority communities.
So, ethnic minorities make up a higher percentage of key workers than white people. But is this the only contributing reason to heightened concerns?
In short, no. Concerns over COVID-19 aren’t as simple as the fear of catching the virus and dying from it, there are cultural concerns that are being overlooked too. It’s more than just worrying about negative symptoms; social distancing is taking over culture and tradition in an emotionally detrimental way.
For example, people from Indian backgrounds described worries over the missing of cultural ceremonies after someone passes away. One person explained:
“As the Indian community have rituals and ceremonies when someone dies, their biggest concern is not being able to say goodbye to their loved ones if one was to pass away from coronavirus in the correct way.”
In addition to this, people are scared and frustrated by the way the news has been portraying ethnic minorities pre-disposal to COVID-19. Some people spoke about how the media portrayed their genetics as ‘weaker’, and this can be taken offensively. Through reporting these differences, it’s made people worry more — and this hasn’t been helped by the reporting of government announcements, increasing the negative perception of the government through the eyes of ethnic minorities. In a time where people are scared, they expect to be reassured by the people getting them through it. Instead, these communities feel that the opposite has happened.
Lastly, there is historic medical mistrust that is deep-rooted in these communities. This can be seen by the lack of willingness of Black participants to take part in COVID-19 vaccine trials — 94.3% of surveyed Black participants said that they wouldn’t want to take part.
We need to break this cycle
Increased worry among ethnic minorities leads to underrepresentation in clinical trials. Underrepresentation leads to exacerbated health inequalities. Health inequalities then contribute to increased worry among these communities. It’s a cycle, and it needs to stop.
As an industry, the different concerns over COVID-19 must be addressed and corrected. Otherwise, we run the risk of making these concerns more concrete, rather than alleviating them.
By listening to these communities, the industry can make real changes that will increase participation. By understanding the cultural concerns as a result of social distancing, the industry can begin to make changes that can help to reassure ethnic minorities, not increase worry. The industry must be the one to make the change. And change begins with listening to those who are affected.
Maddi describes herself as ‘a little nosey’ – which is just what makes her excel in the research she does for us. Her positive energy and get-up-and-go attitude help make every project a success, understanding patients’ needs on a more fundamental level.