Public involvement in the Swedish health system: citizen dialogues with unclear outcomes

BACKGROUND: In systems with representative democracy, there is a growing consensus that citizens should have the possibility to participate in decisions that affect them, extending beyond just voting in national or local/regional elections. However, significant uncertainty remains regarding the role of public involvement in decision-making, not least in healthcare. In this article, we focus on citizen dialogues (CDs) in a health system that is politically governed and decentralised. The aim of the study was to evaluate the functioning of citizen dialogues in the Swedish health system in terms of representation, process, content, and outcomes. METHODS: This study was conducted using a qualitative case design focusing on CDs at the regional level in Sweden. The regional level is politically elected and responsible for funding and provision of healthcare. The data consist of public documents describing and evaluating the CDs and interviews, which were analysed drawing on a modified version of the Abelson et al. analytical framework for evaluating public involvement in healthcare. RESULTS: Some CDs were an attempt to counteract political inequality by inviting groups that are less represented, while others aimed to increase legitimacy by reducing the distance between policymakers and citizens. The results from the CDs—which were often held in the beginning of a potential policy process—were often stated to be used as input in decision-making, but how was not made clear. Generally, the CDs formed an opportunity for members of the public to express preferences (on a broad topic) rather than developing preferences, with a risk of suggestions being too unspecific to be useful in decision-making. The more disinterested public perspective, in comparison with patients, reinforced the risk of triviality. A need for better follow-up on the impact of the CDs on actual decision-making was mentioned as a necessary step for progress. CONCLUSIONS: It is unclear how input from CDs is used in policymaking in the politically governed regions responsible for healthcare in Sweden. The analysis points to policy input from CDs being too general and a lack of documentation of how it is used. We need to know more about how much weight input from CDs carry in relation to other types of information that politicians use, and in relation to other types of patient and public involvement. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1186/s12913-023-09947-x.