How media portrayal of clinical trials can lead to underrepresentation

Demand Diversity conducted extensive research within the UK, gathering 418 volunteers of all ages, occupations and ethnicities to take part in interviews and surveys, all to understand their perspectives on the pandemic, clinical trials and healthcare in general. Of the 418 volunteers, 411 took part in surveys, and 7 volunteers took part in in-depth interviews. The aim of this research was to understand how perspectives of healthcare can influence different communities’ views of clinical trials and how this can turn into reluctance to participate, so we ensured that a large proportion of volunteers were from diverse ethnic backgrounds, of which many were key workers.

In terms of the pandemic, the response was very unified. People across all ages and ethnic groups were worried and apprehensive about the pandemic. However, individuals from ethnic minority groups were generally more scared of the pandemic when compared to white people. This translates over to the data collected for the likelihood of taking part in a clinical trial for COVID-19, as only 5.7% of Black/African/Caribbean/Black British people would be interested in taking part in a COVID-19 clinical trial, compared to 25% of white people and 29.5% of Asian / Asian British people.

So, these heightened levels of fear surrounding COVID-19 will likely have led to greater reluctancy to participate in clinical trials, but what else stops ethnic minorities from taking part?

The impact of mistrust on clinical trial participation

Interestingly, when we asked volunteers about their reasons for not taking part in COVID-19 clinical trials, 5% specifically mentioned they were worried about their ethnicity.

“There is still suspicion about why corona has hit the Black community so hard. It does make me a little more cautious about volunteering to be used as a guinea pig as I am suspicious about the efficacy of the treatments targeted at my community.” – Black/African/Caribbean/Black British male

Further to this, there is mistrust in the government. Individuals from Black, Asian and minority groups are aware that they are more at risk of COVID-19, however, they also feel frustrated by the way the government has handled the situation. One person said:

“What the government is saying, that it affects Black people more, makes us believe they want to use us as guinea pigs.” – Black/African/Caribbean/Black British female

This could be seeded in the negative portrayal of the pandemic in the media, as negative connotations will always be associated with higher rates of infection and death in Black communities. Many people reported feeling offended by the way the media had portrayed ethnic minority groups throughout the pandemic, saying that by highlighting the difference in risk, many people were unnecessarily singled out. This led to more people feeling increasingly worried about COVID-19 in these communities.

“You read that Black people are more susceptible to catching coronavirus, which isn’t helpful at all as it makes you even more worried.” – Black African female

This has also led to people feeling that ethnic minorities are viewed as being ‘genetically weaker’. It’s been suggested that this communication style has historically impacted peoples’ motivation to take part in clinical trials, and that this has become well-rooted in society.

“The thing that became annoying is that people were saying Black and Asian ethnic minority people are more predisposed to catching coronavirus, so already they were calling us weaker genetically.” – Indo Caribbean female

So, there is a substantial amount of mistrust in both healthcare and the government. What can we do to resolve this?

How we could rebuild trust and encourage participation of ethnic minorities?

We also asked how it would be best to reach people within ethnic minority communities, and whether this could encourage more participation from these communities. Many of the people we interviewed suggested that visiting people in their communities, like community centres and places of worship, is a great way to start building trust — through meeting people where they are.

“Most people will throw a leaflet in the bin. But if you were to go to their social groups and present your research to them, people will be more likely to listen. Fairs or festivals would be best.” – Black African female

Similarly, the same impact could be had through advertising on Asian TV channels to connect with the community.

“They watch a lot of Indian TV stations — so if someone from that station is telling them that volunteers are needed then they will be more likely to do it as it is from a trusted source.” – Indian female

The common denominator here is that information about clinical trials must come from a trusted source. Community centres, places of worship and Asian TV channels are seen as trustworthy sources, and a familiar place to engage with people. In order to begin rebuilding trust within these communities, it’s best to start by reaching out to them in places they feel comfortable.

Is this really all it takes to rebuild trust?

In all honesty, no. Rebuilding trust in communities that have been underserved and mistreated for so long will be no easy task, and there are large amounts of scepticism in how well this method of communication will work.

“The government will find it very difficult to gain their trust as they feel undervalued for so long — and they have been. I’m not sure how you can get their trust back — aside from going out there and talking to the community. But that takes a while.” – Hispanic female

It’s unrealistic and naïve to believe that a single, one-off campaign will be enough to reverse years of medical mistrust. But a well-equipped, well-informed movement with distinct aims to overcome communication barriers and medical mistrust in ethnic minority communities definitely has the potential to start the ball rolling in the right direction.

You can read the full research here.