POS0183-PARE SUPPORTING PATIENTS INVOLVED IN THE PREPARATION OF MEDICAL GUIDELINES
Authors: J. Clausen
Journal: Annals of the Rheumatic Diseases (2024)

<h3>Background:</h3> The Arbeitsgemeinschaft der Wissenschaftlichen Medizinischen Fachgesellschaften (AWMF; Association of Scientific Medical Societies) coordinates the national program of medical guidelines in Germany. According to the AWMF, the involvement of patients is mandatory for medical guidelines of higher quality. However, the preparation of medical guidelines is a challenging task for patients who, in general, have no medical training. <h3>Objectives:</h3> The Deutsche Rheuma-Liga (DRL; "German Rheumatism League") is the largest self-help organisation in Germany and is committed to improving medical care for the approximately 17 million people with rheumatic and musculoskeletal diseases. One of the primary tasks of DRL is to train and support patients involved in the preparation of medical guidelines. <h3>Methods:</h3> After announcement of a new medical guideline, interested volunteers are then recruited from among the members of the DRL. Interested volunteers are invited to an introductory meeting. The scope, content and process sequence of medical guidelines are explained. In addition, the various possibilities for support by DRL are outlined. <h3>Results:</h3> In the initial meeting with DRL, interested patients are informed about the various phases in the preparation of clinical guidelines (introduction, PICO questions, literature search and evaluation, level of evidence and level of recommendation, wording, and consensus). The tasks of patient representatives as individuals, as representatives of "all" patients and as representatives of the patient organisation, are outlined. The possibilities for continuous support by DRL are explained, such as searches in literature databases for specific, patient-relevant questions and the sharing of experiences of other patients living with the same condition (based on surveys among the members of DRL). DRL organises network meetings for the patient representatives on a regular basis. The network meetings provide room for exchange of experience, discussion of obstacles, training of additional skills and discussing additional ways of support by the organisation. The regular meetings strengthen the motivation of the patient representatives and increase the probability of repeating participation in the course of guideline updates, which has proven beneficial from DRL's perspective. Patient representatives of DRL have participated in the development of more than 40 medical guidelines (including updates) in the last eight years. Patient involvement in medical guidelines ("the patient's perspective") is important for improving the relevance, quality, and validity of medical guidelines. Patients contribute their experiential knowledge, complementing the professional perspective of the scientific experts. Experiential knowledge is based on introspection and the shared reflection of illness experiences in everyday life and covers an important additional facet of the respective disease. The medical experts do not usually address questions such as fatigue, sport and self-management, but the patient representatives do so. <h3>Conclusion:</h3> Training and continuous support by their patient organisation is important for patients in order to guarantee their continual, valuable and successful involvement in the preparation of medical guidelines. <h3>REFERENCES:</h3> <b>NIL.</b> <h3>Acknowledgements:</h3> <b>NIL.</b> <h3>Disclosure of Interests:</h3> <b>None declared.</b>