Quality criteria for experience reports in the health system

Neuruppin, 6 September 2023

Reports on personal experience with illness may help other affected individuals but need to meet certain quality criteria to be considered reliable. The German Network for Health Competence has issued a position paper on good practice for experience reports to define such criteria. Drafted by experts, the set of rules describes in detail how to collect and publish experience reports.

One of the involved parties was a project team based at the Institute of Social Medicine and Epidemiology, directed by Prof. Dr. Christine Holmberg, at the Brandenburg Medical School Theodor Fontane (MHB): DIPEx Germany (short for databank project for individual patient experiences in Germany). The project serves to collect and record individual experiences with various diseases by way of interviews. Data are collated in a database, scientifically evaluated and published online at krankheitserfahrungen.de.

Prof. Holmberg explains that illness experiences made by others help to place one’s own experience in context: “This kind of exchange of personal experience is significant for self-help groups, for example. It is also useful to illustrate medical information, create an awareness of specific issues and an understanding of experience-related health aspects, and it gives access to subjective perceptions. Such reports can moreover provide important information for health professionals in advanced training. The website krankheitserfahrungen.de offers scientifically sound and low-threshold information and support to affected individuals, family, and medical experts. DIPEx Germany adheres to international quality standards and research methods applied by the University of Oxford.    

Criteria described in the new position paper range from transparency and finances to scientific assessment. The paper presents quality criteria for patient histories and experience reports in the health system to be utilized for targeted information, and suggests characteristics to those who collate, edit, evaluate and publish such personal testimonials. The publication aims to ensure the quality of experience reports and minimize risks. The target group comprises editors, authors and those responsible for health information, whereas patients and interested individuals may apply the criteria in the critical appraisal of experience reports.

The position paper was compiled and annotated in a public commenting procedure. It is available here on the website of German Network for Health Competence (dngk).