[Patients' involvement in and and their demands on evidence-based medicine]

Representatives of evidence-based medicine have repeatedly declared their goal of integrating patients and their demands on the health care system in discussions and networking forums. If one takes various indicators of consumer demands into consideration--like, for example, the Berliner Mängelliste (a list of inadequacies and deficiencies of the Public Health Care System compiled by members of the Berliner Selbsthilfe-Forum chronisch kranker und behinderter Menschen (a platform of discussion for chronically ill or handicapped participants in self-help groups) or, for example, the results of a study which researched consumer demands on information in decision-making situations, then a number of mutual fields of interest between patients and evidence-based medicine professionals can indeed be found. On the other hand there is a series of issues which patients repeatedly articulate, which are not among those most important to evidence-based medicine. Such issues include, for example, more personal attention, acceptance, holistic treatment methods, and the elimination of deficits in the quality of the Health Care System. To successfully involve patients in the networking process in a meaningful and permanent way and to make their involvement in the activities of evidence-based medicine more than a rhetorical aim, the discourse should not exclusively correspond to specialised interests of professionals, but rather should take up the issues given priority to by patients and should consider their working conditions, their stress-factors and their often limited resources. If it is seriously intended that patients and members of self-help groups take an active interest in promoting those parts of evidence based medicine helpful and efficient for them, then more effort must be made, on the one hand, to motivate them and to provide more comprehensive information and, on the other hand, patients and their initiatives must receive more support.