Diabetes and research – are we speaking the same language? – By Richard Elliott
As scientific and medical research become increasingly important to the health and wealth of the nation, more and more of us are being asked to take part ourselves. This includes active participation in clinical trials of new treatments and health services, as well as more passive support by agreeing to the anonymous use of our healthcare records.
Diabetes UK supports both forms of participation (as you can see here and here), because they are vital for the progress of our own funded research and essential for helping to advance our understanding, prevention and treatment of chronic health conditions like Type 1 and Type 2 diabetes.
As researchers ask for more from the public, and from people with diabetes in particular, it’s increasingly important that research is communicated in a way that is understandable and appropriate to these audiences.
Attending the Diabetes UK Professional Conference in Liverpool this week, I heard a thought-provoking talk from Professor Jane Speight, Director of The Australian Centre for Behavioural Research in Diabetes at Diabetes Australia, who focused on the language that is often used by researchers and the unintended meanings it can carry for people with diabetes.
In particular, referring to people with diabetes as ‘diabetics’, ‘patients’, ‘sufferers’ or ‘research subjects’, serves to dehumanise and victimise them by defining them exclusively according to a health condition that is but a single part of their lives. In addition, terms, such as ‘compliant’ / ‘non-compliant’ and ‘well controlled’ / ‘poorly controlled’, cast the management and monitoring of diabetes as a constant series of tests that people with diabetes are always striving (and sometimes failing) to pass.
By drawing on these terms, and focusing on the individual (rather than their diabetes) as the problem, Prof Speight argues that the language of research helps to perpetuate a culture of ‘blame and shame’. People with diabetes are then forced to buy into this culture if they want to engage effectively with researchers or follow the results of studies they are asked to take part in.
To address this, Prof Speight and her colleagues developed a 2011 position statement proposing a new language for diabetes and encouraging those who work in diabetes medicine and research to think more carefully about the language they are using. It’s possible that many professionals (and even some people with diabetes) will see this as political correctness or as a simple failure to appreciate the shorthand of research. But a more careful use of language is something that researchers cannot afford to overlook if they want people with diabetes to play a bigger and more supportive role in research.