New research funded by NIHR ARC East Midlands shows that ethnic minorities are underrepresented in studies into multiple long-term conditions (MLTCs), despite being more likely to be affected.
A systematic review published in the Journal of the Royal Society of Medicine found a lack of reporting on ethnicity and underrepresentation of ethnic minority groups in intervention studies to improve the management of MLTCs.
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, 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.
The new ARC East Midlands-funded 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.”
Professor Kamlesh Khunti, Director for NIHR ARC East Midlands, 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 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.
Read the full paper here: https://journals.sagepub.com/doi/full/10.1177/01410768241233109
Published on: 16 Apr 2024