Background
The England and Wales 2021 Census highlights that 18.7% of the UK population, almost one in five people, are from ethnic minority groups. While this diversity shapes British society, health inequalities disproportionately affect many of these minority communities. Chronic conditions such as Chronic Obstructive Pulmonary Disease (COPD) are more prevalent in people from Black and South Asian groups, and particularly Bangladeshi and Caribbean communities. According to a study on Health Equity in England, in 2018 nearly 40% of ethnic minority people in the UK were living in poverty compared to 19% of White British individuals, underscoring the intersection of health and social inequalities in shaping outcomes.
Over a million people in the UK live with COPD, a lung condition that causes breathlessness, wheezing and other symptoms. Reports suggest that there is a strong link between respiratory diseases, deprivation and health inequalities. This increased risk is often linked to higher exposure to risk factors such as smoking, poor housing and occupational hazards.
Studies available highlight that ethnic minority communities in the UK face significant barriers to accessing timely healthcare, including referral and take-up of pulmonary rehabilitation (PR) services, a programme combining exercise and education that helps manage symptoms. Factors such as language difficulties, cultural (mis)perceptions, and socioeconomic disadvantage contribute to these health inequalities, often making it harder for minority groups to access the care and information they need to manage their COPD and live well with it.
Lack of COPD research with ethnic minority groups
Research on COPD and the experiences of ethnic minority groups in the UK is notably limited. This gap hampers the ability to understand and address the complex drivers of health disparities. One significant challenge is the underrepresentation of ethnic minority groups in clinical trials and broader health research. This underrepresentation skews data, leading to findings that may not be generalisable to the entire population. Barriers like mistrust in the healthcare system, language differences, and a lack of culturally tailored recruitment strategies further exacerbate this issue.
Researchers also struggle to disaggregate health data by ethnicity, as many datasets fail to capture nuanced categories or to consider intersecting factors like migration status and socioeconomic conditions. The NHS Race and Health Observatory has pointed out that institutional biases within research design, funding, and academic structures often prioritise mainstream health issues, leaving those affecting minority populations underexplored. Without more granular data, it becomes difficult to develop effective interventions or policies aimed at reducing health inequalities.
The Importance of Inclusive Research
Embedding Equality, Diversity and Inclusion (EDI) in research is vital to addressing health inequalities. The UPTURN study, which focuses on COPD and health disparities, is addressing this challenge by incorporating an EDI workstream throughout the 5-year programme of research. We consider inclusivity in all the study work packages, community engagement, patient public involvement (PPI), and dissemination. EDI is not only an ethical imperative but also enhances engagement with minority communities and takes into consideration language and cultural competence. This helps ensure that research truly includes the experiences of underserved populations, adding depth to the findings.
Inclusive research is crucial for ensuring that interventions like pulmonary rehabilitation meet the needs of all communities. By integrating perspectives from deprived and ethnic minority groups, this research aims to address barriers to attendance and deliver culturally sensitive support, ultimately improving access, reducing health inequalities, and enhancing patient outcomes.
Summing up….
While the inclusion of EDI in health research offers numerous benefits, it can be challenging to know how best to integrate it throughout a study. The UPTURN EDI workstream is a novel approach to research inclusion and there will be a lot of learning along the way. It will be important to share experiences, challenges and successes along the way, and support other researchers in the wider adoption of inclusive research practices. Producing toolkits, providing training, and disseminating lessons learned through blogs and academic articles are effective ways to promoting EDI in health research.
As the research landscape continues to evolve, it is becoming increasingly clear that incorporating EDI in our work is essential. Funders now also expect EDI to be embedded in every stage of research, from recruitment and data collection to dissemination and impact assessment. This shift signals a growing recognition of the importance of inclusivity in producing robust, meaningful research that can genuinely reduce health inequalities.
About the Author:
M M Golam Rabbani (He/Him) is a mixed-methods researcher, filmmaker, and environmental activist of Bengali heritage. After completing his PhD, which focused on non-migration behaviour in response to increasing environmental stresses, he worked on projects related to climate adaptation, entrepreneurship incubation, and circular sanitation across Asia and Africa. He is now part of the UPTURN-EDI team, at the University of York, where he contributes to the co-design of a culturally tailored Pulmonary Rehabilitation (PR) service for COPD patients in the UK.