Self-help organisations as patient representatives in health care and policy decision-making

A crucial question about participation is who is legitimised, willing and capable of representing particular collectives. Social insurance health care systems tend to focus on representation by patient organisations. Self-help organisations (SHOs), as one type of 'health consumer and patient organisation', often take over this role. Research findings indicate that participation by SHOs is accompanied by high expectations, but also by concerns about the risks of instrumental abuse, overload and professionalisation. However, there is a dearth of in-depth knowledge about both potential and risks of participating for the SHO. To tackle this research gap, a qualitative study design was used to investigate fifteen SHOs in Austria. Data were generated by expert interviews with SHO representatives and documentary analysis of SHO websites. Content analysis was applied. SHOs in Austria advocate for patients' interests, participate in invited spaces and have various forms of cooperative relations with the health care system. Thereby, they draw on the experiential knowledge of their members without, however, systematising it. Experiences with professionalisation and instrumental use are ambiguous, whereas overload is prevalent. SHOs need resources for reflection in order to define their position visà- vis the health system and to realise their potential as patient representatives. Deepening co-operation with the health care system might lead to new participatory practices acknowledging differences in culture and the resources of both sides.