Learning from Bengali speakers about language barriers in cancer care
Language barriers significantly impact patient care, trust, and outcomes, especially in diverse regions like East London. The Translate Myeloma project, supported by a small grant from the Centre for Public Engagement (CPE) last academic year, aims to improve cancer care by enhancing the quality and availability of translated medical documentation for Bengali-speaking patients. Led by Dr. Stephen Peter Hibbs, the initiative evaluates how inadequate translations affect patient understanding and trust.
As a haematology doctor in East London, I have treated many blood cancer patients who have limited English proficiency - particularly Bengali and Sylheti speakers. I have long been concerned that language barriers contribute to suboptimal care, and I have, on occasion, witnessed patients come to harm due to miscommunication.
The Translate Myeloma project seeks to address these concerns by exploring the role of translation in cancer care. Written medical documents - such as consent forms and patient information leaflets - are essential for supporting patient understanding within and beyond clinical encounters. However, in the UK, these documents are rarely translated into languages other than English or Welsh. Where translations of health information do exist, they are often produced using unvalidated machine translation tools, potentially leading to significant errors that might undermine both trust and comprehension.
A team of translation researchers, patient information specialists, and clinicians gathered to develop evidence in this space, aiming to test three hypotheses. First, we hypothesise that machine translations, while appearing readable, are often deeply flawed when it comes to conveying critical medical information. Second, we hypothesise that poor translation quality erodes patients’ trust in healthcare providers and negatively impacts their understanding of essential health information. Third, we hypothesise that providing translated chemotherapy consent forms will enhance both comprehension and trust, even when an interpreter is present. Finally, we aim to create validated Bengali translations of key clinical documents, such as chemotherapy consent forms and myeloma information leaflets, which can serve as models for other medical contexts and languages.
Before receiving a Patient and Public Involvement (PPI) grant, our project was already taking shape. We had spent around nine months assembling a research team, designing methodologies, and developing materials. However, we had not yet engaged directly with individuals who experienced being newly diagnosed with myeloma and who spoke Bengali as their first language. We wanted to understand their experiences with medical documents and translation (or lack thereof). We also wanted to assess whether our chosen documents were culturally appropriate. Finally, we wanted to refine our planned methods and outcome measures.
Organising this session was particularly challenging because most of our research team don’t speak Bengali. It quickly became clear that our core research team required additional Bengali-speaking members. These Bengali-speaking team members were crucial in the PPI exercise and they have also continued to shape our approach to conducting the study.
We worked with doctors and nurse specialists within local hospitals to find individuals who both spoke Bengali and had myeloma. After months of preparation, we were finally able to hold an in-person meeting with two Bengali-speaking patients and one family member. Given the language barrier, we hired a professional interpreter and allocated part of our budget toward translating the documents we intended to discuss.
The meeting was enlightening. Patients in the meeting explained how translation quality has an emotional impact, going beyond the effectiveness of information transmission. They expressed a meaningful connection to the words of human translations, which influenced their trust and sense of care. We also heard how important translated documents are in facilitating family communication. When family members do not speak English, the burden of translating complex medical information falls on the patient. Providing well-translated documents enables patients to share accurate information with family members, rather than having to interpret it themselves. Finally, we learned from the professional interpreter who attended the meeting, who shared how written translations can significantly improve the quality of verbal interpretation for technical language.
We are grateful for the support of the Centre for Public Engagement, whose small grant allowed us to strengthen our research. Since the meeting last year, we have secured additional funding to carry out the main research project and hope to complete this in the coming months.
Dr Stephen Peter Hibbs
Email: s.p.hibbs@qmul.ac.uk