uni'wissen 02-2015_ENG

long time can offer others with the same illness practical and emotional support, help them make decisions, and give them useful tips – such as on how diagnostic procedures run, what helped them, and what daily life with the illness is like. Portraying a Range of Experiences The Internet is full of blogs, chat rooms, and forums on particular diseases. “But it’s difficult to determine how balanced and relevant the information is,” says Lucius-Hoene. Under her coordination, the Universities of Freiburg and Göttingen launched the website www.krankheits- erfahrungen.de in 2011, and they now also receive support from a working group at the Charité teaching hospital in Berlin. It is the first site in Germany to offer patient stories for specific ill- nesses compiled with scientific methods. It currently includes modules for seven illnesses and will soon be expanded to nine. The stories are not meant to be statistically representative but to portray as wide a range of experiences as pos- sible: including experiences with doctors, payers, and therapies as well as the interviewee’s own experiences coping with the illness. Lucius-Hoene and her team conducted up to 50 extensive interviews for each of the illnesses featured on the site, such as chronic pain or type 2 diabetes. They then transcribed them, published them as video, audio, and text files, and organ- ized them by topic with the help of computer pro- uni wissen 02 2015 “Every contribution is valid.” With their narratives, patients can support fellow sufferers and their families and help them make decisions. Photo: Britt Schilling 33 uni wissen 022015

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