Over the last two decades, the inclusion of patient voices and public values in the field of health care through deliberation has become increasingly emphasized, by patients as well as policy-makers. This is achieved not only through individual patient participation but also through patient interest organizations. Geographical representation within national interest organizations is especially important in a decentralized, multilevel policy field such as Swedish health care, allowing representation from all regions to be present in national advocacy. Using Pitkin’s conceptualization of political representation, this study aims to characterize the shaping of representation among Swedish federative patient organizations, in a time of professionalization and centralization of civil society. The results show that patient organization representation has functioning mechanisms for all studied aspects of representation; however, the nature of the substantive representation seems to contain a challenge from a democratic perspective. This leads us to a discussion about management, rooted in democratic ideals but simultaneously strongly characterized by more managerial ideals, and the contradiction of democracy and actionable management.

Background and aims: During the COVID-19 pandemic, vaccination as an important and engaging topic once again entered the public debate in many countries, including Sweden. In particular, the varying degree to which different social groups tend to choose to get vaccinated was raised as a point of discussion on the agenda. Thus, the aim of this study was to investigate the role of various forms of trust, especially community trust, in the explanation of vaccine coverage in the Swedish COVID-19 immunisation programme. Methods: In this study, individual survey data from the Swedish Trust Barometer were aggregated and combined with socio-demographic register-based data at Regional Statistical Areas (RegSO) to examine the relationship between trust and vaccine coverage at the local community level. Results: The results showed that both generalised and institutional trust seemed to be essential when it comes to explaining vaccination coverage. In addition, we showed that community trust, that is, trust in neighbours and people living in the neighbourhood, was an even stronger factor when it comes to explaining vaccination coverage at the local level. Conclusions: This article contributes to the literature on trust in relation to health care by identifying a new dimension of trust with significance to immunisation that is worthy of future scholarly attention.

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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.

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