Can cultural safety training for sites improve diversity?
Clinical trials has made its way into the spotlight, with the pandemic shedding light on inequities across the industry. Through our Demand Diversity project, we’ve researched how the public is perceiving the industry during a time of heightened awareness, with a large focus on the perspectives of ethnic minority groups and key workers.
Over the last few months, we’ve conducted a series of surveys and interviews (411 surveys and 7 interviews to be exact!) to find out how people were feeling about COVID-19, clinical trials, and underrepresentation in the industry. We wanted to understand exactly how the healthcare industry was perceived by people from ethnic minority backgrounds, so that we can begin to break down barriers in patient recruitment in these communities.
We found some shocking, but unsurprising, results. If you’d like to read the full report, you can find it here.
The majority of people we interviewed and surveyed knew that ethnic minorities were underrepresented in COVID-19 clinical trials; this is likely as a result of COVID-19 clinical trials being in the media frequently. Whilst discussing the perceptions of healthcare and clinical trials, one topic that got repeatedly mentioned by the volunteers was cultural competency. Many of the interview responses included references to the current lack of cultural competency in healthcare and clinical trials, and the benefits that could arise out of training being readily available to healthcare professionals.
“Maybe the people who run the clinical trials need to speak different languages and become more culturally competent and find ways of communicating more.” – Indo Caribbean female
How do people feel about participating in trials led by culturally competent staff?
In the survey, when directly asked about how they’d feel about joining clinical trials if the study staff were more culturally competent, 27% of people said that they’d be more likely to take part. Interestingly though, nearly 55% of people said that they didn’t believe it would impact their decision to take part. There are a host of studies that indicate the significance of cultural competency, with papers stating that cultural competency training in research has the potential to produce more valid research, increase diverse patient enrolment and retention, and consequently reduce health disparities. Could our findings be due to an unconscious decision, where individuals are unaware of the difference cultural competency could make? This is an interesting point in itself, and it certainly deserves some dedicated research of its own.
Despite the majority of people believing cultural understanding would have little impact on their decisions to take part in clinical trials, most interview participants seem to be aware of the lack of cultural understanding and have highlighted the issues that this raises.
“A white woman talking to a group of other white women will sound more credible than a girl doing the same but dressed in a sari as an example. Because you look like them and talk like them. This would be unconscious behaviour; you wouldn’t be aware of it.”– Indo Caribbeanfemale
It’s important to understand the impact that representation on a staff/researcher level is important too, as one person explained:
“I think diversity within both researchers and participants is pretty poor, and it affects the outcomes and the recommendations they come out with as well.” – Black African female
The way we communicate is important too…
One person pointed out that lack of representation, or lack of staff that have undertaken cultural competency training, can contribute directly to health inequalities. This is namely due to the differences in explaining symptoms, where miscommunication could lead to symptoms being overlooked or incorrectly identified.
“I think healthcare need cultural competency. 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.” – South Asian female
It is possible that this could translate over to clinical trials, such as the reporting of side effects. This area also deserves some more in-depth research.
Finally, the use of familiar languages may help to improve the perceptions of healthcare and could increase participation in clinical trials. People are more likely to take notice of recruitment materials if it’s written in their language.
“I think language is really important. You have to know who you’re sending them to first of all.” – Indo Caribbean female
Overall, there are a plethora of ways we can help to improve diversity in clinical research. Ensuring that study site staff are culturally competent, improving diversity in staff roles, and creating recruitment materials are available in multiple languages, can really go a long way.
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.