Two-front individualization: The challenges of local patient organizations

Abstract

ABSTRACT Patient organizations such as those in Sweden face individualization processes on two fronts, both in their own voluntary sector and in the healthcare sector. The aim of this study is to investigate how the patient organizations are handling the two-front individualization process internally in their organizations, as well as externally towards a more patient-centred healthcare system. With more diverse stakeholders and individual patients given increased influence, we would expect a corresponding adjustment in the strategies of the patient organizations. The article’s focus is on the organizations’ representative role, and theories on advocacy strategies are used to identify the nature of the patient organizations’ advocacy work. To find out how adjustments are made, 17 semi-structured interviews were conducted with representatives from local branches of three large Swedish patient organizations. The interviews show a low tendency to adjust as a response to this two-front individualization and illustrate a paralyzed rather than modified behaviour in these organizations. Individualization being a global trend, we believe these results are of interest to scholars of collective participation in all parts of the world.