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Education and tailored communications are required to bridge the ethnicity gap in clinical trial participation

March 11, 2024 – Clinical Trials – DEI, Ipsos, clinical trials

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%)
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%)
Nearly 1 in 4 (23%) ethnic minority adults reported that they did not trust pharmaceutical companies to test treatments and devices on them
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
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.

8 March 2024 — London, UK — 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.

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.

To gain a deeper understanding of the perceptions of clinical trials in the UK and how conducting research to give voice to future clinical trial participants is important in determining what changes need to be made, read the full “Diversity and clinical trials in the UK” report from Ipsos, available here: https://www.ipsos.com/sites/default/files/ct/publication/documents/2024-02/Health%20Equity_Clinical%20Trial%20Research_Feb2024.pdf.

About Ipsos

Ipsos is the world’s third-largest Insights and Analytics company, present in 90 markets and employing more than 18,000 people. Our passionately curious research professionals, analysts and scientists have built unique multi-specialist capabilities that provide true understanding and powerful insights into the actions, opinions and motivations of citizens, consumers, patients, customers or employees. We serve more than 5000 clients across the world with 75 business solutions. Founded in France in 1975, Ipsos is listed on the Euronext Paris since July 1st, 1999. Visit: www.ipsos.com.