Collective Patient Participation : Patient Voice and Civil Society Organizations in Healthcare

The importance of engaging patients in the development of healthcare services and policy has received increasing attention over the last decades. However, this attention has mainly been directed towards various forms of involvement of individual patients. This dissertation shifts focus to the collective forms of patient participation and the specific values they bring. The overall aim of the dissertationis to explore how collective patient participation is shaped, in an increasingly individualized and marketized society. The articles included in the dissertation analyze aspects such as advocacy work, representation mechanisms and coproduction practices at different levels of healthcare. These aspects are studied from the perspective of civil society organizations navigating current social trends such as individualization and marketization. Taken together, the findings point to the importance of considering the preconditions of the individual patient to engage in patient participation in a collective form. This appears to be an important factor in the shaping of collective patient participation, as well as a potential challenge for both advocacy and representation. The findings also indicate that individual and collective forms of participation should not be seen as two conflicting interests, but could rather be mutually strengthening, something that should be considered both by civil society organizations and healthcare policymakers. Furthermore, this dissertation contributes to a better understanding of the diverse nature of patient participation, and how these variations all play important yet distinct roles in improving democratic and quality aspects of healthcare

The Role of Pensioner Councils in Regional Healthcare Policy : A Holistic Perspective

To ensure older individuals actively engage in healthcare service development and policymaking, it is crucial to counteract declining social and civic participation with age. It is also necessary to clarify the potential and impact of participatory activities. This study examines citizen participation among older adults in Swedish health policy development. Using Thurston et al.‘s (2005) holistic framework, the study analyzes pensioner councils (PCs) in politically governed healthcare regions. Through 13 interviews and six years of PC meeting minutes, findings from a deductive content analysis suggest that PCs build trust and foster deeper dialogues between older adults and politicians, due to their long-term nature. A trusting relationship between citizens and decision-makers may benefit society at large by enhancing the legitimacy of policy decisions. Although achieving direct policy impact is challenging, these councils serve vital participatory and deliberative democratic functions, contributing to a stronger policy community and increased transparency in the democratic process. This study highlights the complexities of assessing PCs solely based on policy influence and immediately evident outcomes, emphasizing their role in promoting democratic values, while also drawing attention to the tension between participatory and representative democracy

Two-front individualization : The challenges of local patient organizations

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

Federative patient organizations in a decentralized health-care system : A challenge for representation?

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

The role of community trust for compliance with the Swedish COVID-19 immunisation programme

This research was made possible through generous access to the survey Trustbarometer. The Trustbarometer is carried out by Statistics Sweden on behalf of Marie Cederschiöld University College (previously Ersta Sköndal University College) and is funded by Länsförsäkringars forskningsfond. The PI of the Trustbarometer is Professor Lars Trägårdh. </p

Is the perceived risk of fire-related injury and trust in local authoritiesaffected by rescue services’ actual ability?

Rescue services are one of the most crucial actors in providing fire-related societal protection, particularly interms of response times. To achieve this, considerable funding and/or full-time organisations are required –something that is not always feasible and leads to differences in rescue service related protection in differentmunicipalities. In turn, the question is how such variations affect the perceived risk of being injured in a resi-dential fire and levels of general institutional trust in the municipality. By utilising a dataset on risk perceptionand trust, combined with data on the ability and structure of municipal rescue services, this study can show that amunicipal’s average perception of the risk of attaining a fire-related injury closely follows response times –indicating that individuals living in areas with less societal protection are aware of this fact. However, the resultsalso indicate that general institutional trust and perception of risk on a municipal level seems to relate to eachother in such a way that municipal types (with similar sociodemographic characteristics and rescue serviceability) congregate around similar levels of perceived risk and trust. In turn, this study therefore indicates thatperceived risk and trust differs in different municipalities and that efficiency measurements not necessarilyencompass all these differences

A Study of Differences in the Perceived Risk of Attaining a Residential Fire Injury

Certain groups (e.g., those of higher age, lower educational attainment, lower income, living alone, immigrants, etc.) have a greater risk of residential fire mortality. Previous research has also shown that individuals belonging to high-risk groups have generally lower levels of fire protection, and it has been suggested that this is due to a lower risk perception in this group. As such, this study investigates how the perceived risk of being injured in a residential fire varies in the Swedish population. The results show that risk perception varies in the Swedish population depending upon sociodemographic factors. When the different sociodemographic factors are controlled against each other, women, individuals with a low educational level, individuals living in rural communities and individuals born outside of the Nordic countries consistently experience their risk to be higher. With the exception of women, the results show that high-risk individuals have a high risk perception. These results are important as they indicate that it is not a lack of risk awareness that is the reason why high-risk groups are less inclined to implement fire safety practices

Privatisering av välfärdstjänster: hur garanteras kvalitet i vård och omsorg?

In recent decades, the Swedish welfare system has come to involve more privateactors. Swedish law, however, is still clear that health and social care should be characterizedby good quality regardless of its mode of operation. A central concern hasbeen how to politically ensure quality as welfare providers become more numerousand of different types. To what extent are politicians still able to monitor qualitywithin private health- and social care? The article reviews several quality assurancemechanisms that are built into the privatization reforms: how contracts are specifiedand monitored and how patients use their choices to send signals about carequality. A review of the literature illustrates the difficulty for politicians to formulategood contracts and follow them up. Also, patients’ choices are not a reliablesource of information about care quality since they rarely make informed choices.Not being able to monitor quality in a proper way risks creating a legitimacy gapfor the entire welfare system