How do ethnic minority groups in the U.S. view clinical trials?
You may remember that last year Demand Diversity conducted research into the perceptions of clinical trials and healthcare among ethnic minority communities, in the UK? If you don’t quite recall, you can read it here.
So, this year, we decided to do the same with ethnic minority communities over in the United States (U.S.) too. Ultimately, we wanted to explore attitudes towards clinical trials from these communities, understand the barriers in participation, and determine what factors may influence people’s decisions to take part.
Ready to see what we found?
Opinions on clinical trials
Our research showed that ethnic minority groups display a strong sense of scepticism, distrust and hesitation around all aspects of healthcare, which extends into clinical trial. Even though all ethnic groups displayed some level of negative opinion on healthcare, there were key differences in reasonings between ethnic groups. Here’s an overview of the differences:
Black American ethnic group
Hispanic ethnic group
Had the strongest level of distrust towards the industry.
Distrust was typically related to the discrimination people faced in society.
They believed that they are treated differently, and that the level of care they received was of lower quality than other ethnic groups.
Expressed concern over the potential side effects of medications, and as a result were hesitant to trust medications and the companies that made them.
This was fuelled by a deep scepticism of the money made by pharmaceutical companies, and the expense of treatments and healthcare services.
In general, this ethnic group was the most trusting towards healthcare, with some participants mentioning family members who work in healthcare.
There was a difference in opinions between generations. The older generation were more likely to prefer to take herbal or traditional remedies.
Similar to the Black American ethnic group, the Native American ethnic group were distrusting of the healthcare industry due to the discrimination faced in society.
The Native American group were particularly guarded in talking about healthcare due to their medical mistrust.
So, what contributes to this deep level of medical mistrust?
The Demand Diversity research found that there are two key themes that contributed to medical mistrust — unequal treatment and money.
The impacts of unequal treatment
This was particularly among Black American and Hispanic women. Numerous women expressed concern that the care they were receiving was suboptimal in comparison to their white counterparts.
"As an African American female, we are taught healthcare providers are not there to protect us. Healthcare providers who don’t look like us are not here to protect us. As an African American woman who is expecting a child, I am more likely to die in the hands of a white doctor than a Black doctor." – Black American
"Medical professionals are not as keen to listen to women of colour that verbalise pain, but they would listen to other ethnic groups. There’s an assumption that they’re complaining, and they should be tougher than others." – Hispanic
Some participants described the need for cultural safety training among healthcare professionals.
"I wish people were more educated. Doctors are supposed to treat everyone the same, not have favourites. They need unconscious bias training." – Black American
The price of pharmaceuticals in the US
The second key theme we established was the scepticism expressed towards the amount of money the pharmaceutical industry makes. The general consensus was that people in ethnic minority communities were more likely to have lower socioeconomic backgrounds compared to their white counterparts. This occupies a lot of people’s time and energy — meaning they may not want to prioritise spending their time taking part in clinical trials. There was also discussion around limited education on clinical trials, and that the availability of information among low-income positions may help reduce underrepresentation of ethnic minorities.
"[Those] in low-income positions or ethnic minorities only know about clinical trials if they’re sick. They will be on state healthcare such as Medicare. They need education more. The middle class have more access to the information." – Hispanic
Further to this, healthcare and medical insurance is expensive in the U.S., and with less income comes lower quality insurance packages. This exacerbates the level of mistrust in the industry, amplifying the notion that pharmaceutical companies are more concerned with making money than treating people.
"It’s all ruled by money – they don’t care about the patient’s health, it’s a quick fix." – Hispanic
So, where does this leave us with clinical trials?
It’s likely that these factors contribute to underrepresentation of ethnic minorities in clinical trials. Moving forward, we must rectify medical mistrust and form trustworthy relationships with these communities, as this is one of the largest barriers to overcome in improving diversity in clinical trials.
We asked the participants to share one final piece of advice for the pharmaceutical industry, here’s what each community had to say:
Listen to us and learn from us. – Black American participants
Show us you value us. – Hispanic participants
Don’t forget about us in the data. – Asian American participants
Respect our culture. – Native American participants
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.