Berlin. O Medical center closure for Quality in Medicine (ÄZQ) at the end of the year brings lines of concern to the Alliance for Chronic Rare Diseases (ACHSE). “ÄZQ has been an important partner for us for years, especially when it comes to creating and disseminating quality-assured, understandable and disease-specific information,” says Dr. Christine Mundlos, ACHSE Deputy Managing Director. This happens regularly with the involvement of the respective patient organization. “This allows for an exchange of trust between those involved.”
ACHSE is not only concerned about the dissolution itself, but also about the announcement without any further clarification about how and by whom independent, evidence-based work on care guidelines and patient information will continue in the future. It is not yet clear how the perspectives of patients and their self-help organizations will be taken into account.
ÄZQ, jointly founded in 1995 by BÄK and KBV, acted as an independent moderator and brought representatives of medical disciplines and patient representatives to the round table to jointly discuss optimal care from different perspectives. At ÄZQ, national evidence-based care guidelines, patient guidelines, brief information about diseases, including rare diseases, and decision-making aids were developed that gave patients guidance on the care provided by general practitioners and specialists. according to ACHSE. This is particularly important for people with chronic illnesses and disabilities.(HL)