“Matters of inclusion” and “robust translation methods” should be adopted to improve ethnic minority participation within vital health research.
Interdisciplinary teams from the Centre for Ethnic Health Research, based in Leicester, ARC East Midlands, and the UCL Institute of Education, University College London have been looking at how different subgroups of people are included in clinical research.
One of the lead researchers Dr Andrew Willis, based at the Centre for Ethnic Health Research and the University of Leicester, said: “The COVID-19 pandemic has brought into focus, issues of health inequality and the disproportionate disease burden experienced by ethnic minority communities, compared to the population as a whole.
“High-quality research is essential in providing evidence-based healthcare that works. However, we know that due to genetic, social and cultural differences some people may respond differently to various health interventions and treatment. It’s because of this that it’s vital we find a way to include the entire culturally diverse community so we can cater for everyone.”
One key issue to tackle that was identified by the researchers was language barriers. They said some ethnic minorities might have low first language literacy, low health literacy or may find speaking, understanding, reading or writing in English challenging when it is not their dominant language.
Associate Professor Talia Isaacs, from UCL, a project team member with language expertise, said: “Translating a document into a person’s heritage language may not be enough to solve the issues we’re facing. In some cases, there may be a need for greater resource availability, including access to bilingual healthcare workers or professional interpreters and cultural tailoring of information. A more sustained approach might be necessary to build understanding and enhance trust.
“We need to ensure matters of inclusion are always considered at all stages of the research process and robust translation methods should be employed, but consideration of language-specific information must always be taken into account.”
Research carried out during the pandemic has found there is an increased COVID-19 risk among ethnic minorities and many people from these communities are hesitant to have the vaccine.
Professor Kamlesh Khunti, Director of the Centre for Ethnic Health Research, said: “Improving access and promoting diversity in research must be a priority for governments, researchers and healthcare workers.
“We must come together to reduce health and socioeconomic disparities, ensuring we’re inclusive of all. But, whatever strategies we use, inclusion cannot be overburdensome and limit the feasibility of carrying out research.
“We need pragmatic approaches to ensure trial research accommodates everyone, so we can develop interventions, treatments and pioneering approaches for all.”
Researchers affiliated with the MRC-NIHR Trials Methodology Research Partnership (TMRP) Trial Conduct Working Group supported this area of study on the translation challenges and strategies.
The Centre for Ethnic Health Research is working to reduce health inequality in the region by sharing resources and promoting research. The Centre is supported by the University of Leicester and ARC East Midlands.
Published on: 23 Jul 2021