The Democratic Value of Citizens' and Civil Society Organizations: A Comparative Study of Rare Disease Organizations and Their Representative Claims

The participation of citizens’ and civil society organizations (CCSO) in health care decision- making is established very differently in countries all over the world. Research revealed that while in some countries stakeholders such as health care professionals or policy makers remain skeptical, in more and more countries CCSOs are expected to represent patients and health users in diverse settings of health care decision-making.

Against this development it is not surprising that scholarly attention for CCSOs has increased over the recent past. However, because of the lack of comparative cross-national studies our understanding of CCSOs is still limited. An important gap in the literature concerns the issue of representation. Most studies take the democratic value of CCSOs for granted. However, to really understand their democratic contribution to decision-making we need more insight into what representation of CCSOs means and how it is put into practice in different contexts.

In this paper we provide such insight using the concept of representative claim (Saward 2010). Based on document analyses as well as expert interviews with their representatives we explore whom or what CCSOs claim to represent, in what setting of health care decision making they do or wish to participate and on what grounds they base both their representative and participatory claims.

Since CCSOs have a different set-up and play a different role in different countries we use a cross-national approach. The comparative study focusses on rare disease organizations in Austria, Germany and the Netherlands.