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Systematic collection and analysis of Corona experience reports

Brandenburg an der Havel, 5 September 2022

A team led by Prof. Christine Holmberg (director, MHB Institute of Social Medicine and Epidemiology) collected narratives from people all over Germany infected by the Corona virus SARS-CoV-2 between 2020 and 2022 for inclusion and analysis in a new Covid-19 module for the DIPEx project, a database project exploring individual patient experience. Last Friday, results were presented in Brandenburg an der Havel in a ceremony attended by the Brandenburg Minister for Social Affairs, Health, Integration and Consumer Protection, Ursula Nonnemacher. The website https://www.krankheitserfahrungen.de/module/COVID-19 now offers reports by affected patients. The Federal Centre for Health Education (BZgA) co-funded the COVID-19 project.

Prof. Holmsberg is pleased with the highly topical addition to the website and describes the many peculiarities and approaches to the illness: “Our team aimed to record and document even those experiences which the media do not publicise on a daily basis. Audio and text excerpts give honest and authentic impressions of how patients coped with being isolated, how they got medical care, of problems they faced and support they received. Some of our interview partners are still struggling to recover, while others did not show any symptoms. Some are afraid, others aren’t.”

Anne Thier, research assistant at the above institute and project coordinator, underlines the importance of balanced information on a much-discussed topic such as Covid-19.

The website offers to affected individuals a wide range of experience as well as practical advice, assistance and orientation for daily routine. It also contains a list of additional sources on medical aspects of Covid-19 and forms of assistance. According to Prof. Holmberg, the narratives on the website may also be useful to medical professionals for purposes of further training.

Health Minister Nonnemacher praised the Covid-19 module as an important platform of objective information to counteract fake news in the frequently overheated debate on Corona.

Further topics addressed on the website: ADS/ADHS in children and adolescents, breast cancer, inflammatory bowel disease, chronic pain, colorectal cancer, type 2 diabetes, epilepsy, eating disorders: anorexia and bulimia, medical rehabilitation and prostate cancer

The internet site www.krankheitserfahrungen.de is the licensed website of DIPEx Germany (German database project for individual patient experiences) based at the Institute of Social Medicine and Epidemiology, Brandenburg Medical School. DIPEx Germany is a member of the parent organisation DIPEx International (www.dipexinternational.org). The umbrella organisation and its members aim at an improved understanding of health and illness experiences. They gather individual experience reports in accordance with uniform scientific standards for analysis and presentation to the general public, for the benefit of affected patients and their families, health professionals, political decision-makers and researchers. International collaboration serves to generate material for cross-country analyses.

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