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Prof. Dr. Gabriele Lucius-Hoene
Institut für Psychologie
Abt. für Rehabilitationspsychologie
79085 Freiburg

Tel. 0761/2033050

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Patient experience as empowerment. German version of the website DIPEx with development of the modules “Diabetes” and “Chronic pain”

In this project, an Internet portal is set up for patients and their families (www.krankheitserfahrungen.de) to present patients’ personal experiences with chronic diseases. The construction of the website at the University of Freiburg is based on the model of the British site www.healthtalkonline.org, which comprises more than 70 diseases and health problems.


The narratives provide the visitors to the site with personal experiences of life with the disease, of therapies and measures, of dealing with medical assistants and institutions and of the effects on everyday life. The narratives are gathered, evaluated and developed in interview studies according to scientific criteria. On the website, they are presented in overview texts and in personal stories with selected video or audio clips.


The experiences and perspectives of sufferers can be useful in many ways to other clinically ill persons and help in terms of diagnostic and therapeutic decision-making. In contrast to many forums and chat rooms for patients, the experiences on krankheitserfahrungen.de are prepared scientifically and convey the wide range of experiences and information aids. A further use of the data base consists in the deployment in education and training of medical personnel. Moreover, the website is evaluated for scientific research.
In a first step, the two diseases “chronic pain” and “Diabetes mellitus type II” are presented and the usability of the website is evaluated.


Status of the work
The data base of the module “chronic pain” comprises 42 interviews, the module “Diabetes Mellitus type 2"  has 35 interviews. On the website, the disease narratives are presented in the form of thematic summaries and in individual depictions and are each consolidated and illustrated with original excerpts from the interviews as text, video or audio clips. The themes are categorised through key words. In addition, links to reliable medical information and care resources are offered.


The first two modules are devoted to Diabetes Mellitus (project location Berlin/Göttingen, Prof. Schwantes and Prof. Himmel/Dr. Janka Koschack) and chronic pain (project location Freiburg, Prof. Lucius-Hoene). The technical construction of the website was performed in collaboration with the computer centre of the University of Freiburg.


In January 2010, a test version of the website on the basis of 15 to 20 interviews per module was published for test purposes. From the beginning of 2010, qualitative evaluation studies of user friendliness by different user groups took place. The website was launched online in a ceremony at the University of Freiburg on 11.2.2011.

Scientific publications and theses have been compiled using the data from both modules.


At the same time, the two project groups form the working group DIPEx Germany as the organisational core for the construction and extension of www.krankheitserfahrungen.de. Here, the future focus will primarily be on selecting further diseases, with the acquisition of project funds to extend the website, with ensuring of qualitative standards, the development of the project and work group structure and the cooperation with other work groups.
DIPExGermany holds the sole licence of the DIPExCharity for the German version of DIPEx. The work group DIPExGermany is a founding member of the international umbrella organisation DIPEx International, as the association of all countries in which DIPEx projects are conducted. Since February 2009, a yearly meeting of DIPEx International has taken place with a scientific and organisational program.


Project timeframe
April 2008 to March 2011
 
Project leaders
Prof. Dr. Gabriele Lucius-Hoene (coordinator)
Prof. Dr. Wolfgang Himmel
Prof. Dr. Ulrich Schwantes




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