For World Diabetes Day and in the November issue of the Berlin Institute of Health (BIH) podcast “Aus Forschung wird Gesundheit”, Dr. Katarina Braune, co-lead in Digital Transformation & Applications at the Institute for Medical Informatics, shares the latest developments in the field of diabetes technology and on the recently published position statement on "Language and Diabetes: #LanguageMatters".
Dr. Braune is a board-certified pediatrician, diabetologist and co-founder of the "OPEN" project. The OPEN project is an international and interdisciplinary research project funded by the EU, which investigates open-source systems for automated insulin delivery (open-source AID) from a medical, behavioral-, social- and computer science perspective. These systems are being developed by a community of people living with diabetes and their loved ones behind the hashtag #WeAreNotWaiting and are freely available to the public. In addition to scientific findings, researchers of the OPEN project, in cooperation with a total of 48 experts from diabetology and medical law, published an international consensus statement as a guide for the use of open-source AID systems in the special issue "100 Years of Insulin" of the journal The Lancet.
Furthermore, Dr. Braune introduces the newly published joint position paper of the German Diabetes Society (DDG), diabetesDE and #dedoc° Diabetes Online Community on "Language and Diabetes: Language Matters", to which she contributed as a co-author.
"Language Matters" is an initiative that advocates for communication with and about people with diabetes that is free from stigma and accusation. In 2011, Diabetes Australia launched the world’s first position statement about diabetes and language, called ‘A New Language for Diabetes’ – but, while the practical language solutions advocated were new to many, the underlying issue was not new at all. For many years, people with diabetes had been speaking about the power of words and communication in peer discussions and, in particular, about the damage done by negative judgments and thoughtless remarks.
With the initiative behind the hashtag #LanguageMatters, a global movement has formed to promote a thoughtful and non-discriminatory use of language in context with diabetes. The website languagemattersdiabetes.com provides statement and position papers of professional and advocacy organizations from many countries and language regions around the world, with recommendations for careful and positive use of language in connection with diabetes. As of World Diabetes Day 2022, a “Language Matters” position paper in German is now available on languagemattersdiabetes.com.
Using specific examples, the authors explain how certain phrases or terms related to diabetes can be perceived as discriminatory or stigmatizing and suggests suitable alternatives.
In dialogue with the German Press Agency, Dr. Braune explained: “Some words and statements can feel discriminatory or stigmatizing for people with diabetes, even though they have been established for a long time. There are non-judgmental and non-stigmatizing alternatives.” Terms such as “Zuckerkrankheit” (German for ‘sugar disease’), “Jugend-/Altersdiabetes” (German for ‘diabetes of the juvenile/elderly’) are no longer considered medically correct and up-to-date. Furthermore, terms such as “adherence to therapy” and “compliance” are discouraged. Instead, the authors recommend to communicate value-neutral and empathetically in the sense of participatory decision-making. Dehumanizing terms such as “Entgleisung” (German for ‘derailment’, referring to the metabolic status of people with diabetes) and close-up photographs showing of the abdomen of overweight people instead of the person with diabetes were also criticized.
The authors emphasize that the position paper is not intended to lecture or correct others. Instead, they encourage dialogue on the previous use of language in context with diabetes and provides food for thought for a thoughtful and non-discriminatory use of language.
Link zum deutschsprachigen #LanguageMatters Positionspapier: www.languagemattersdiabetes.de
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