Organized Patient Participation in Health Care: Collective Advocacy, Representation and Autonomy in Socio-Ethical Perspective (Abbr. OPARA)

Patient organizations (POs) are increasingly involved in lobbying, in policy deliberations and inform the public opinion through their campaigns. The POs have the important task to represent the needs, wishes and interests of specific patient groups, but there is still little knowledge about the cultural and organizational dynamics of PO activities. Moreover, for certain patient groups, who have conditions that impair their capacities to conduct self-representation activities, two different POs exist: organizations FOR patients (established by and for patient's relatives-carers) and organizations OF patients (composed of patients themselves). The interests, campaigns and other activities of these two different POs may be incongruent, due to different ideas about the desirability to find a cure and about the types of care necessary for the disease. This project will scrutinize how and whose interests are reflected in the advocacy of POs and how should be dealt with discordant patient representation. It will be specifically focused on POs concerning Autism and Dementia.It will be studied how POs can influence health policy-making and service provision; interviews will be conducted with patient representatives to get insight into group interests and dynamics of representation, and theoretical approaches for concepts such as collective representation, advocacy and autonomy in POs will be developed. Furthermore, to scrutinize to what extent the position of POs is influenced by cultural factors and its organizational context, this study compares the position of German and Israeli POs. T