Ethnic minorities are underrepresented in studies into multiple long-term health conditions, research reveals

New research funded by an East Midlands research organisation shows that ethnic minorities are underrepresented in studies into multiple long-term conditions, despite being more likely to be affected.

A systematic review funded by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) East Midlands has found that intervention studies to improve the management of multiple long-term conditions (MLTCs) rarely report on ethnic minority groups. 

The prevalence of MLTCs is escalating, due to ageing populations and lifestyle shifts. In England, an estimated one in four adults have two or more long-term health conditions, impacting quality of life and healthcare costs.

Previous research says that ethnic minorities face an increased burden due to being more likely to experience higher levels of socioeconomic deprivation – a key determinant of the development of MLTCs.

Professor Kamlesh Khunti, Director for NIHR ARC East Midlands and Professor of Primary Care Diabetes and Vascular Medicine at the University of Leicester, said: “This study unveils a stark reality: ethnic minorities impacted by multiple long-term conditions remain largely unheard in research.

“It is imperative we bridge this gap, ensuring inclusivity in studies to pave the way for truly representative and effective healthcare solutions.”

The new review examined 13 intervention studies, encompassing more than 4,000 participants. The analysis revealed that only four out of 13 studies provided any information on the ethnic breakdown of the study population. Moreover, ethnic minority groups were underrepresented among the people who took part in the studies.

In eight of the 13 studies, there were selection biases whereby the inclusion criteria explicitly stated that participants must be able to speak English (or the country’s national language) or have access to a translator. No studies reported any cultural adaptations or tailoring, such as the use of translators or translated materials.

Meanwhile, socioeconomic status (SES) was reported in 12 out of 13 studies but representation of low SES groups varied across studies due to different measures being used. With low SES groups more likely to be affected by MLTCs, the paper calls for standardisation and consistency in how SES is reported.

The researchers said that it was important that health research reports on and includes the people whom it may most benefit. Lead researcher, Zara Kayani of the University of Leicester, said: “Ethnicity data should be recognised as being equally as important as reporting participants’ sex and age.

“Better representation of underserved groups is needed in health research. This would contribute towards reducing health inequalities and would ensure health research is reflective of those groups who it may be most advantageous for.”

The researchers concluded that future MLTC intervention studies should focus on improving the recruitment of ethnic minority groups, and ensure they report on the ethnicity of included participants. Low SES groups should also be represented in MLTC intervention studies and efforts should be made to improve recruitment of these groups as studies of interventions may benefit these specific groups the most.

This study has been funded by the National Institute for Health and Care Research (NIHR) Applied Research Collaboration (ARC) East Midlands.

NIHR ARC East Midlands funds vital work to tackle the region’s health and care priorities by speeding up the adoption of research onto the frontline of health and social care.

This research has been published in the Journal of the Royal Society of Medicine and can be accessed on the website.