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

Tel. 0761/2033050

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Individual health experiences as a source of information and help for decision-making: further construction and evaluation of the website

On the internet site, personal illness experiences are published with the aim of providing scientifically founded information and support for patients, their family members and medical specialist personnel. Over the last three years, in a first project phase, the website was constructed, initially with the two modules "chronic pain" and "type 2 diabetes". The project was implemented by the project group DIPExGermany, located in Freiburg and Göttingen. The website is based on the model of the multiple award-winning British website, which was founded and is run by the DIPEx Research Group at the Department of Primary Care at the University of Oxford.
The illness narratives are gathered in qualitative interview studies and are scientifically processed and presented on the website in texts, video or audio clips. They provide sufferers and their families with personal experiences on life with the illness, on therapies and support possibilities. The narratives are also used as a database for scientific studies on the subjective perspective of sufferers and are used in the training and further education of medical personnel.
The website with the modules "chronic pain" and "type 2 diabetes" was launched on 11.2.2011. In the second funding phase, building on the already existing illness modules, two further modules will be added – "epilepsy" at the location of Freiburg and "chronic inflammatory bowel diseases" at the location of Göttingen. The new modules were compiled in line with the methodology developed in the previous project by means of narrative interviews and qualitative scientific analytical methods.
Following this, the usefulness of the website for sufferers will be evaluated and the reception of the presented experiences explored and potential for improvement identified. The website will be examined in terms of its function as a source of help and information for patients. The usage behaviour, opinions and attitudes of "users" of the page will be gathered through automatically compiled PC data as well as quantitative questionnaires and qualitative interviews.
During the project timeframe, project applications for new modules will be made to other funding providers; usage possibilities which have already begun in the areas of training and teaching of physicians and medical personnel will be extended and further data evaluations for scientific publications will be made.
DIPEx Germany participates in the building up of the international umbrella organisation of countries with DIPEx collections, DIPEx International, with the development of mutual, transnational projects, research strategies, organisational possibilities as well as joint quality standards for the national websites.
Project leaders:
Prof. Dr. Gabriele Lucius-Hoene
Dr. Janka Koschack
Prof. Dr. Wolfgang Himmel
General project coordination: Prof. Dr. Gabriele Lucius-Hoene
Further co-workers:
Freiburg workgroup: Dipl.-Psych. Martina Breuning
Göttingen workgroup: Dipl.-Soz. Alexander Palant

Project timeframe: 33 months, beginning April 2011

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