Bridging the Ethnicity Gap in Clinical Trial Participation: Education and tailored communications needed

What’s behind the lack of diversity in clinical research?

Clinical trials are foundational to the development of lifesaving medicines and achieving better outcomes in healthcare. However, clinical trial participant cohorts have historically lacked diversity, despite knowledge among the scientific community that clinical outcomes differ across different demographics, including ethnicity. The issue of increasing diversity in clinical trials has recently become a hot topic in healthcare, with pharmaceutical companies publicising their efforts to recruit more representative study participants.

To understand current perceptions towards clinical trials in the UK, Ipsos conducted a survey of more than 8,000 adults using the KnowledgePanel to gain a nationally representative sample. The survey included 12% ethnic minority respondents from across the UK over 16 years of age, providing a snapshot of the country’s sentiments. The results highlighted the differences in attitudes towards clinical trials between those from white and ethnic minority backgrounds.

This survey found that 6 in 10 (58%) adults in the UK reported that they would be willing to participate in a clinical trial. However, ethnic minority adults were significantly less likely to participate, at a rate of 4 in 10 (41%). Of those who had been invited to participate in a trial, ethnic minority adults were also significantly less likely to participate – only 36% of these agreed, compared to 44% of white adults.

Fear and mistrust of clinical trials are prevalent among ethnic minorities in the UK

The survey uncovered significant differences between white and ethnic minority adults which may help to explain what is driving poorer perception of clinical trials, including fear, mistrust, and lack of knowledge. 

While fear of side effects was the largest barrier to participation for all adults surveyed, it was significantly higher among ethnic minority adults (58%, compared to 50%). This was particularly high among Black/African/Caribbean adults aged 35-44 (72%) and Asian adults aged 65-74 (68%). 

Nearly 1 in 4 (23%) ethnic minority adults also reported that they did not trust pharmaceutical companies to test treatments and devices on them. This was highest among Black/African/Caribbean adults (29%).

Ethnic minority adults were significantly more likely to report feeling uncomfortable spending time in hospitals or healthcare settings (15% compared to 10%). This was highest among Black/African/Caribbean women, of whom 1 in 5 (19%) reported this discomfort as a barrier to clinical trial participation. Ethnic minority adults were also significantly more likely to feel that staff would not listen to them during a trial (11% compared to 6%). Again, this was highest among Black/African/Caribbean women (17%).

23% of ethnic minority adults felt uncomfortable being studied, compared to 8% of white adults. This may be connected to the fact that 19% of ethnic minority adults also reported knowledge of clinical trials being conducted unjustly in the past, compared to 10% of white adults.

The number of adults who were familiar with clinical trials was significantly lower among ethnic minorities (77%) compared to white adults (94%). 1 in 4 (27%) ethnic minority adults said that they did not know enough about clinical trials to take part in one. This feeling was highest among Black/African/Caribbean men (36%).

Building trust through education and tailored communication as a first step to bridge the gap

The survey results show some potential avenues for actions that could be taken to improve public perception of clinical trials. For example, the potential for participation to lead to better health outcomes for oneself and others was seen as biggest driver across all respondents. Emphasising the benefits conveyed to society by taking part is key for messaging. To target concerns about side effects, messaging should also emphasise the ways in which participants’ health and wellbeing is checked throughout study participation.

Our study also found which communication channels were preferred by ethnic minority adults. Having a discussion with a healthcare provider was the most preferred method across adults of all ages, and for those aged 16-34, visiting a website or receiving an email from their provider was also popular. Leaflets and brochures were also well accepted and offer an easy avenue for sharing information as they can be provided at a low cost in multiple languages with links to other resources (like a website). Black/African/Caribbean young adults (aged 16-24) and adults over 55 were also interested in receiving group education which could be conducted in healthcare settings or community settings.

Increasing diversity will in turn have a reciprocal effect on trust: in our survey, 7 of 10 adults in the UK agreed that encouraging more diverse clinical trial participation can increase trust in the healthcare and pharmaceutical industries. Taking steps to make sure that information about how clinical trials work, and the benefits of taking part in them, is more accessible is key to combating the lingering perceptions of historical injustice and mistreatment that hinder research participation among ethnic minorities in the UK.

Technical Note 

This study was conducted on the KnowledgePanel between 14th – 20th September 2023. The KnowledgePanel is a random probability survey panel. Therefore, the KnowledgePanel does not use a quota approach when conducting surveys. Instead invited samples are stratified when conducting waves to account for any profile skews within the panel.
The sample was stratified by country and education. A total of 16,138 panellists in the UK (16+) were selected and invited to take part in the survey. Of these, 8,260 respondents completed the survey.

To ensure the survey results are as representative of the population as possible, the below weighting spec was applied to the data in line with the target population profile. Up to 3 people per household were allowed to complete this survey. To account for this and varying household sizes, we employed a design weight to correct for unequal probabilities of selection of household members. Calibration weights have also been applied using the latest population statistics relevant to the surveyed population to correct for imbalances in the achieved sample. England and Wales, Scotland, and Northern Ireland were each weighted separately, while an additional weight has been created for the United Kingdom to account for any over or under-sampling within each of these countries.

Calibration weights were applied in two stages:

1. The first set of variables (using ONS 2019 mid-year population estimates as the weighting targets): An interlocked variable of gender by age, and region.
2. The second set were (using ONS 2019 mid-year population estimates and the ONS Annual Population Survey as the weighting targets): education, ethnicity, index of multiple deprivation (quintiles), and number of adults in the household. Ethnicity and number of adults in the household were not applied to Northern Ireland.