The lack of diversity in clinical trials is something we’ve spoken about time and time again. By now, you might think we sound a bit like a broken record. But, the fact is, many people still aren’t aware of the underrepresentation, especially those who don’t work in the industry. Do you think if the clinical research industry could see the people they were leaving out of clinical trials, and hear how they felt about being underrepresented, it would make a difference?
This is what led us to create the Include Us All campaign. As part of this campaign, a small cohort of diverse people, all with varying degrees of knowledge around clinical trials, were first given a statistic to show the representation of ethnic minority groups in COVID-19 clinical trials. Here are the statistics we shared:
Of the 270,000 people signed up to the NHS vaccine registry for COVID-19 clinical trials:
4% (11,000) are from an Asian or Asian British background
Less than 1% (1,200) are from a Black African, Black Caribbean or Black British background
Shocking, isn’t it?
It’s been clear for a long time that ethnic minority groups are at higher risk of severe COVID-19 infections. In fact, research has shown that patients from Asian and Black ethnic groups made up 15.2% and 9.7% of critically ill patients respectively. Yet, the same groups of people are being underrepresented in clinical trials. Here’s a snippet of what the interviewees had to say about it:
“That’s quite shocking actually.”
“There’s a lot of different people from different groups that occupy this planet, so why is that statistic so small?”
“Illnesses and medication do not stop on certain races, it’s across everybody.”
How does that make you feel?
The participants were then asked how that statistic made them feel, and their emotions ranged from surprised, to angry. Further to this, all of the participants said that knowing about the diversity issue in the industry made them more motivated to take part in a clinical trial. This means that hesitancy and mistrust are not the only factors that contribute to a lack of diversity in clinical trials, because many people aren’t even aware that it’s an issue.
“It’s an assumption isn’t it, you just kind of assume that they will have trialled on everyone.”
If more people were aware of the inequalities, there’s a chance more people would want to try and solve the problem.
Why is diversity in clinical trials important?
“At the end of the day, if it’s not trialled on the right people, then it might have an adverse event.”
Simply put, if we don’t test drugs and therapies on a diverse group of people, we will never truly know if it works. Clinical trials give researchers the opportunity to identify crucial trends — what happens to those trends when we don’t even collect ethnicity data? With the ethnic minority population in the UK growing, it’s more important than ever that we ensure the medicine we’re producing works for everybody. And that means making sure that clinical trials include us all.
If you’d like to see the campaign, you can watch the full video below.