Diversity in research matters

Diseases can impact racial groups in different ways, says Director of NIHR ARC East Midlands Professor Kamlesh Khunti, so we must have diversity and inclusion in research to help develop better and more effective treatments.

Three years ago, a 63-year-old African American woman with colon cancer was rushed into hospital. She had been treated with a common chemotherapy drug called fluoropyrimidines and was suffering from a serious side-effect known as pancytopenia. This involves a rapid and sudden decrease of red and white blood cells and platelets.

The severe pancytopenia and high fluorouracil plasma concentration this patient experienced were likely related to the inheritance of an uncommon variant of gene DPYD Y186C (rs 115232898) that is observed in African Americans. It significantly reduces the metabolic rate of fluorouracil.

The patient recovered and went on to complete the planned treatment for her cancer. But her case has attracted the attention of researchers. They argue there is emerging evidence that the Y186C variant is important in patients with African origins who are receiving fluorouracil, and that more studies are needed.

Research is skewed towards white people

Up to 30% of people who are treated with fluoropyrimidines every year are given lower doses to avoid potentially fatal side-effects, as their bodies would not be able to process the standard dose. Around 38,000 people with cancer in England are treated with fluoropyrimidine.

Scientists are beginning to understand why some people react so severely to it, identifying four different variations of DPYD as the potential cause. However, the available evidence is based on people with European ancestry.

Because the genetic data we have is largely from white people, healthcare is geared towards this group. Tests for diagnosing inherited cardiac conditions or cancer can be four-and-a-half times less accurate for people of African descent compared to those from Europe.

When research participants do not accurately represent the characteristics of the overall population of those with a particular condition, certain populations may not receive the same benefit from research innovations.

This is massively concerning, especially because we live in the era of precision medicine. Drugs are being developed for, and tailored to, specific segments of the population. Diversity and inclusion in research is essential because some diseases impact racial groups in different ways.

Creating a framework to enable change

The Centre for Ethnic Health Research (CEHR) works to address inequalities associated with ethnicity in healthcare access and health outcomes. Working to ensure diversity in research participation is one of its major priorities.

The CEHR is hosted within the Leicester Diabetes Centre at the University of Leicester as part of the NIHR Applied Research Collaboration, East Midlands (ARC EM). This is the lead ARC for Equality, Diversity and Inclusion (EDI) of under-represented groups in research.

ARC EM created the Equality Impact Assessment in 2019 in recognition of the need to ensure that research does not disadvantage anyone, particularly individuals or groups who are underserved or have a protected characteristic as defined by the Equality Act 2010.

In the context of health research, an Equality Impact Assessment is a process involving analysis and practical implementation that helps a research study ensure that everyone’s needs will be, and are being, met. The most important outcome of this process is ensuring that groups and individuals who face disadvantage and underrepresentation are visible in priority research settings.

ARC EM created a toolkit to help run this assessment. This toolkit consists of comprehensive training, a directory of useful resources, and ongoing advice and guidance.

Download the free toolkit here.

Interactive monthly workshops are available for researchers and study teams within NIHR ARCs who require further support in carrying out an EqIA.

ARC East Midlands is also hosting an online seminar with the CEHR on Equality Impact Assessments. The seminar will take place on 15 June. Register here.

For more information and to find your local ARC, see the NIHR ARCs website, sign up for our monthly national newsletter and follow us on Twitter @NIHRARCs. Sign up for the next NIHR ARCs national webinar on 'Mental health and social inclusion' on Wednesday 21 June 2023.