The involvement of patients in the development of clinical guidelines essentially aims at ensuring and improving the quality of patient-centred care. Hence, it becomes an important tool for quality management in medicine since patients are learning the hard way where clinical care is lacking. This may include the inappropriate consideration of current medical knowledge, the unintelligible or insufficient information and education of the patient or information gaps at the interface between care settings. These experiences from the patients' perspective can be purposefully integrated in quality assurance measures, for example, by including the patient perspective in clinical guidelines and patient guidelines. Suitable procedures for the collection and presentation of the experiences of patient organisations are essential for the successful involvement of patients in guideline programmes. Patient organisations collect data on the experiences and attitudes of their members for different purposes. A systematic approach has been sought but hardly practised so far. This is the result demonstrated in a survey among 112 member organisations of the "Bundesarbeitsgemeinschaft SELBSTHILFE von Menschen mit Behinderung und chronischer Erkrankung und ihren Angehörigen e.V." (BAG SELBSTHILFE), a federal German self-help association of disabled and chronically ill people and their relatives. Patient participation in the "Programm for Nationale VersorgungsLeitlinien" ["Programme for National Disease Management Guidelines"] has been practised at the Agency for Quality in Medicine (AEZQ) since 2005. The experiences that have been made by those involved with integrating the concerns of patient representatives provide a starting point for a practical handout for patients and consumers participating in guideline programmes. The "Handbuch Patientenbeteiligung-Beteiligung am Programm für Nationale VersorgungsLeitlinien" [Handbook of Patient Participation in the Programme for National Disease Management Guidelines] is intended to make the process of patient participation in guideline programmes transparent and practicable. It describes the background, the organisation and the process of patient participation and offers useful advice to participating patient organisations and their representatives. In this context the question of how patient experiences might be introduced in the guideline and patient guideline development process in a structured and purposeful manner is of special importance. But so far there is too little experience, both nationally and internationally. A survey among self-help organisations shall provide an initial overview.