Data from the National Institute for Health and Care Research (NIHR) has revealed that UK geographies with the highest burden of disease also have the lowest number of patients taking part in research. Dr Natalie Darko, Associate Professor of Health Inequalities at the University of Leicester and author of Engaging Black and Minority Ethnic Groups in Health Research: ‘Hard to Reach’? Demystifying the Misconception explains why diversity in research participation is so important.
Research is fundamental to the delivery of high quality, evidence-based health care for all and should reflect the clinical or care community for whose benefit the research is taking place. Failure to do so can impede our ability to generalise study results and identify appropriate interventions; contributing to widening healthcare inequalities.
Health disparities continue to worsen in some populations based on interacting and multi-level social, economic, and geographic factors, sometimes called the wider determinants of health. These disparities are long-standing concerns of health equity researchers and have recently received additional attention in the context of the COVID-19 pandemic.
The NHS Long Term Plan commits to strengthening its contribution to reducing healthcare inequalities. Following the pandemic, restoring services inclusively was also identified as a key priority for the organisation. To achieve this, the NHS first needs to understand the experiences of underserved communities, who are often missing or underrepresented in research.
The national NHS England approach to narrowing healthcare inequalities, Core20PLUS5, identifies population cohorts at risk of experiencing healthcare inequalities including people living in the most deprived areas, ethnic minority communities and other inclusion health groups. For too long there has been a misconception that these groups are ‘hard to reach’ and that their lack of representation in research can be attributed to poor engagement from the community. Rather, they are infrequently approached, seldom heard, and as a result, systemically excluded.
Practices used to recruit and involve research participants frequently do not consider the diverse needs of different groups. Gaps in knowledge, skills and experience have hampered efforts to achieve improved representation within research and there is an urgent need to equip researchers with the tools to support culturally tailored recruitment and engagement. Central to this is understanding the importance of effective partnership working to overcome structural and cultural barriers to engagement.
In recognition of this, NHS England has developed a good practice guide for researchers engaging with underrepresented communities. The guide aims to help researchers understand why research participation might be low in a group, provide meaningful insights into working with seldom heard groups and offer practical suggestions to increase participation.
Co-produced with representatives from traditionally excluded communities, including young people living in temporary accommodation, Gypsy, Roma and Traveller communities and older South Asian people, the guide provides context, background, and insights into the challenges around recruiting a diverse participant base, as well as outlining practical tips, guidance, and case studies.
The guidance will help researchers and practitioners within the NHS research community to complete the due diligence needed to ensure that people from underrepresented groups are not misrepresented or excluded; helping to ensure equitable access, excellent experience and optimal outcomes for all.