A recent YouGov survey found that 9 in 10 people think that a diverse range of participants in clinical research is important, signalling a society-wide recognition of the importance of diversity. But just knowing that diversity is important doesn’t automatically translate to minoritized groups participating in research. We know that barriers to participation continue to persist, but what are they, and what can we do to overcome them? Read on to discover the three barriers to participation that Adrelia Allen, Executive Director of Clinical Trial Patient Diversity at Merck, outlines in a recent article, and how they can be overcome.
- Distrust in the healthcare system stops people from taking part
Despite some progress in recent years, high levels of distrust towards the healthcare industry within various minoritized groups remains. The Unequal Treatment report found that 20 years ago, systemic racism led to worse health outcomes, and 20 years on, the problem still hasn’t been fixed.
Allen suggests that one effective way to mitigate this is to ensure diversity exists within trial teams and site staff — this diversity will foster trust within participants and communities.
Cultural safety training for trial teams and site staff is also crucial. We can’t change bad experiences that people have had in the past, but we can work to ensure that it doesn’t happen again. Trust is built over time, and actions speak louder than words — the more positive experiences someone has with healthcare staff, the more trust they will have in the system.
- Awareness levels of clinical trials is low
One reason that clinical research participation in minoritized groups remains low is due to a lack of awareness. People simply don’t know what trials exist, where to find them, or how to enrol on them.
Allen stresses the importance of meeting people where they already are — use social media platforms that potential participants are already on to raise awareness of clinical research. She also encourages industry professionals not to overlook the power of in-person interaction. When trying to build trust, making interactions as human as possible can be vital, and what better way to do that than talking face-to-face?
- Consider the financial and time burdens on participants
The fear of the financial and time impacts of participating in a clinical trial can hold people back, and these impacts are typically larger for minoritized groups. In the UK, minoritized ethnic families are between two and three times more likely to be in persistent poverty than White families [Institute of Race Relations]. This means that both financial and time burdens are likely to be larger for minoritized ethnic groups, leading to further health disparities.
Allen suggests that the number of required site visits should be reduced, or made as flexible as possible with home health visits. Reimbursement is also strongly encouraged, for participation at all levels, including early-on patient engagement. Not only does this make clinical research more accessible, but it also shows participants that their contributions are valued.
Although these barriers still exist, progress is certainly being made. Clinical research participation is higher than ever, with almost one million participants taking part in clinical research in England last year alone — equating to the recruitment of 100 people every hour. This marks an increase of over 220,000 on pre-pandemic levels [NIHR].
While awareness and interest increase, now is the time to build on what we’ve already started, and tear down the barriers faced by minoritized groups.