We must encourage conversations around clinical trials in minority groups
Lack of diversity and inclusion within clinical trials is not a recent issue, and many people have been fighting long and hard, including ourselves, to put strategies in place to improve the representation of minority groups in clinical research. However, the COVID-19 pandemic has brought the issue to the forefront, increasing awareness around the lack of diversity and why it is so important for us to address the issue and make a change.
So, at COUCH Health, via Demand Diversity, we recently set out to gain a deeper understanding on how COVID-19 has affected ethnic minorities, including their perspective on the pandemic, clinical trials, and general healthcare.
Overall, 411 people took part in the research, including the following ethnicities:
Mixed/Multiple ethnic groups.
73.1% of the participants were female, 25.4% were male, and 1.2% preferred not to say. 7 people took part in the interviews, all of whom were female from different ethnic backgrounds, including those from Indian, Black African, Indo Caribbean, Pakistani, and Hispanic backgrounds.
Healthcare can be a taboo subject for some
During the interviews, one prominent theme that stood out was the topic of conversations considered to be taboo. Based on the participants’ responses, it appears that ethnic minority groups don’t actively speak about their own healthcare, as it can be very personal:
"I think healthcare needs cultural competency. For example, in the South Asian community, older women do not know how to explain mental health problems. They complain about back pain, stomach pain, but they are describing anxiety or depression. But unless you know the questions to ask people, this doesn’t come out. For some cultures, psychological symptoms are alien words.”- British Asian, female
“Death is a taboo word – no one talks about it. No one wants to admit that they have an illness because it is linked to death and people do not want to become untouchable. So anybody whose got it is like gossip. My experience in the NHS, if anyone was close to death, it is not an acceptable thing because they always believe that god will make it alright."- British Asian, female
“In African communities, if people pass away from cancer, they don’t mention it, it’s very secretive. I think it’s just a taboo in our society and people don’t like to be associated with those types of things. In the white community they are very honest but, in our community, they don’t like to share those personal details." - Black African, female
These responses suggest that healthcare either isn’t communicated properly (such as psychological symptoms being seen as “alien words”) or the topic of healthcare in general is avoided in certain ethnic groups. But why? What is the reason behind this lack of communication?
The reasons behind the lack of healthcare conversations
It’s important for us to understand why these conversations are being avoided.
Pride: One participant’s response suggested that they may be avoiding conversations due to their pride, for example not wanting to be seen as inferior – “nobody wants to admit they have an illness”.
Fear of stigma: One participant’s response highlighted that there’s a lot of gossip in communities, and another suggested that they “don’t like to be associated with those types of things” and therefore, don’t like to share personal details.
This lack of communication could be a potential explanation as to why certain communities are less likely to take part in clinical trials. And it’s time for us to think about what we can do to improve this.
Let’s make a change: What can we do to encourage conversations and clinical trial participation?
Speaking up about healthcare is important for many reasons, regardless of ethnicity. Of course, our health in general should be spoken about, but awareness around clinical trials specifically needs to be improved, too – such as giving people reassurance that clinical trials are conducted for beneficial reasons. This can be done through community engagement, building trust and relationships, and talking about it to raise awareness.
We believe that from our research, in order to break the stigma, thought leaders within these communities must speak up to normalise these conversations. Ways we could do this include:
Using a trusted source
Many of the people we interviewed believe visiting community centres and places of worship is the most successful way to try and change negative perceptions of clinical trials. Advertising on Asian TV shows was also deemed as the best way to connect with this community, as people will trust information showed on there.
Improving community engagement and rebuilding trust
With behaviours so deeply rooted into their culture, it’s going to take a lot of work to make a change and improve diversity. Mistrust is a huge barrier for some and is something that will need to be rebuilt to reassure communities and raise awareness of the benefits of clinical trials. It’s about building relationships within a community and encouraging the ‘information to trickle in’. It’s not something that can be combatted with a ‘one-off campaign’.
Considering cultural safety
One participant responded with: “Maybe the people who run the clinical trials need to speak different languages and become more culturally competent and find ways of communicating more.” It seems that cultural safety could be one way of improving relationships and understanding around healthcare and clinical trials. And as a result, could encourage more people to talk and more people to consider taking part in clinical trials
Time to make a change
There’s no doubt that we have a long way to go to improve diversity in clinical trials. However, the insights we have gained from our research have helped us to understand that the topic of healthcare and clinical trials is often seen as a taboo subject in ethnic minority groups, and it’s our responsibility to help make a change.
It is clear that we need to help break the stigma, rebuild trust, and raise awareness of the benefits of clinical trials to ensure diversity is improved.
As a failed neuroscientist, Ash has sought to bring meaningful change to the healthcare industry ever since by working at some of the biggest agencies in the world, his career spans more than 10 years. His expertise lies in creative communications, patient engagement, diversity & inclusion and patient recruitment strategies for clinical trials – with the ultimate goal in life to make clinical trials more human. When he isn’t doing all that, he’s anticipating the latest movie, expanding that love to screenwriting or trying to be creative.