The Linguist

thelinguist.uberflip.com FEATURES If medical research isn't inclusive, the outcomes can be fatal. Brenda Narice assesses the issues in maternity care Language barriers significantly limit access to health research. 1 This seems to be particularly relevant in the field of women's health, at least in the UK, where most participation information leaflets are issued only in English. As such, they are not fit for purpose for those with limited English proficiency, and eligible people are excluded because they do not speak the language. 2 As a result, ethnic minorities are often underrepresented and/or missing from research that is likely to inform clinical decision making. A clinical practice that only benefits a few – those on whom the best available evidence is based – perpetuates unequal access to research and healthcare for the most vulnerable, which goes against the bioethical principle of social justice. 3 In a clinical context still dominated by the paradigm of evidence-based medicine, equitable recruitment of research participants is, at its core, an ethical issue. 4 The past and, much to our chagrin, the present are notoriously populated with clinical examples in which a lack of diversity in the research population has led to adverse health outcomes. There is, for example, the androcentric bias in the management of a heart attack. Here, the diagnostic guidelines were designed with evidence arising mainly from men to the detriment of women, whose own distinct disease presentation is often not recognised and managed in a timely manner. There is also the ethnic bias in the calculation of kidney function in Black people – only recently challenged – based on a never validated assumption correlating ethnicity and muscle mass. This overestimated renal performance in Black people thereby delaying the diagnosis of chronic kidney failure. While it might be unquestionable that inclusive research is paramount to ensure equity and effectiveness in clinical practice, a multiplicity of complex and intertwined barriers stand in the way. These include lack of access, financial burden, investigator bias, mistrust and cultural/language differences. Learning from experience Over the last decade, as a researcher in women's health and a medical translator and interpreter, I have championed more representative research participation through improved recruitment strategies. Last summer, my research team delivered a workshop with the aim of developing strategies to overcome cultural and language barriers within women's health research. It was sponsored by the University of Sheffield Research Ethics Committee and open to the public. We used Sheffield as our case study, but many of the points raised are likely to resonate with maternity research units across the UK. Although we lack specific numbers, we know that less than 15% of the multicentre studies our maternity unit has taken part in since 2018 have provided documents in languages other than English or expressed an interest in widening recruitment. Some charities, such as the Twin Trust and the British Maternal and Fetal Medicine Society, have been clear exceptions, encouraging researchers to ensure sample representativeness by relocating funds. Upon discussion with sponsors, the most cited barriers to translation have been cost implications and difficulties in finding the right people to perform the job. Even though hundreds of participants were recruited into our local women's research portfolio between When research fails © UNSPLASH

• Cover