Webinar about language and inclusion in medical research and practice attracts global audience
16 August 2021
The UCL Centre for Applied Linguistics and the International Consortium for Communication in Healthcare hosted a webinar to discuss some of the linguistic issues around inclusion and informed consent in medical research and practice.
The event was chaired by Professor Lorraine Noble from UCL and 126 individuals joined the webinar from 28 countries around the world.
Multiple IOE academics spoke at the event, including Dr Talia Isaacs and Dr Zsófia Demjén from the UCL Centre for Applied Linguistics.
Dr Isaacs’s presentation argued that inclusion is an ethical imperative, as information on the safety and effectiveness of new medical treatments needs to apply to people in a society who might not be easy to recruit to trials. She also introduced two recent initiatives in the UK and highlighted a small project funded by the NIHR-MRC Trials Methodology Research Partnership which aims to explore how language-related eligibility criteria (e.g. ‘must speak English’) are enacted when making patient inclusion or exclusion decisions during trial recruitment in the UK.
Dr Demjén’s presentation explored the question: what does it take to understand information sheets and consent forms in clinical trials related to cancer? She showed that there are many aspects of the language of patient information sheets and consent forms in randomised controlled trials that use complex or ambiguous language, and that comprehension challenges might be compounded when the two documents are read together.
The panel discussion was followed by a diverse range of questions from the audience. For example, some questions addressed the connections between language, literacy, technical vs lay discourses, and other factors such as time, education, and learning difficulties when it came to the informed consent process. Other audience members were keen on finding similar research from non-English-speaking contexts, especially places where regional variation and dialects add further layers of complexity.
Dr Demjén said: “It is well-established that certain groups in the population – for example poorer, immigrant, indigenous, and ethnic minority communities – are under-recruited in clinical trials and their health needs underrepresented in medical research and practice. This has been particularly highlighted during the pandemic, where groups at greater risk of severe disease and death from COVID-19, were often not included sufficiently in studies related to the virus in the UK. The reasons for this inequality are complex and systemic and include a linguistic and cultural dimension. We need to better understand the demands of explaining and understanding complex health information and how inferences made about language ability can be used to include or exclude individuals or groups. These problems are not unique to the UK and are particularly salient in multicultural and multilingual societies around the world.
“The discussions that took place reflected a keen and wide-ranging interest in the broad topics presented during the webinar and further support the idea that now might just be time to advance research in these areas.”
The speakers and International Consortium for Communication in Healthcare (IC4CH) invite anyone interested in taking discussions further to please get in touch. Speakers contact details are available in the slide deck (PDF) and you can sign up to the IC4CH mailing list.
- International Consortium for Communication in Healthcare
- Centre for Applied Linguistics
- Department of Culture, Communication and Media