uni'wissen 02-2015_ENG

grams to provide users with various means of finding the information they need. Since the material is authentic, it is also used for training in medical professions. “The interviewers do not say what they think about the narratives,” stresses Lucius-Hoene. “Every contribution is valid.” The well-being of the patients was always given prec- edence over what was good for the website as a whole during the interviews, also with regard to the decision over what could be published. Evaluation studies show that some of the patients experienced the empathetic interviews practically as a kind of therapy. Expert on One’s Own Illness The team took its inspiration for the concept of the website from www.healthtalkonline.org, on which a group named DIPEx (Database of Indi- vidual Patients’ Experiences) from the University of Oxford, England, has collected personal sto- ries on more than 90 different illnesses or health questions since 2001. Trained by the English experts, working groups in twelve more countries have launched similar sites and joined the um- brella organization DIPEx International. But just copying the original was not an option: the men- talities and healthcare systems in the various countries are too different. Whereas medical research usually works with standardized questionnaires and statistical approaches like the counting and analysis of data, krankheitserfahrungen.de provides a unique collec- tion of qualitative data from the perspective of the patients themselves. In compiling the personal accounts of patients, narrative coping research is asserting its place alongside evidence-based medicine. “From an epistemological perspective, that’s a paradigm shift,” says Lucius-Hoene. Ultimately, her goal is to give the patients a much higher standing than they have previously enjoyed in the healthcare system as experts on their own illnesses. What needs to happen before doctors finally take the oft-cited need for patient- centeredness seriously? How can they and their patients make participative decisions concerning therapies? It can at least be said that the website received support from the funding priority “Translational Research on Patient-Centered Approaches to Chronic Disease Care,” which was established by the German pension insurance fund, the statutory and private health insurance companies, and several federal ministries. The project coordinator believes that it will still be a long time before doctors start taking into account the stories before making decisions on treatment. However, initial research projects How do people describe pain, and what images do they find for it? Some patients keep a pain journal to document the course of their illness. Illustration: Svenja Kirsch 34

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