Bringing Political Science into the debate on patient involvement in healthcare decision-making

authors: Lizette Krist, Violet Petit-Steeghs, Roland Bal, Hester van de Bovenkamp There is increasing attention for the role of patients in collective healthcare decision-making, e.g. on setting research agendas and organizational and governmental policy-making. The idea is that this involvement increases both the quality of decision-making by incorporating the experiences of patients and the legitimacy of decision-making as patients are the ones affected by the decisions being made. However, insights from political science to better understand this involvement are rarely used. This is problematic as these insights are crucial to understand these involvement processes and their contribution to democratizing healthcare decision-making better. From a political science perspective, the question who represents the patient perspective is salient, but remains underexplored. Involvement of patients is often studied through the lens of participation (van de Bovenkamp & Vollaard 2019). These studies raise questions about the representativeness of participants in terms of mirroring. The danger is that participation is dominated by the ‘articulate few’, which might result in too little attention for the issues experienced by less vocal groups of patients. There is also literature departing from a frame of identity politics (albeit often implicitly), assuming that only experts-by-experience can express the interests and wishes of patients. This literature then focuses on what makes a good expert-by-experience and how they can be involved in decision-making processes better (Weerman & Abma 2019). The above leaves a lot of what is happening in decision-making practices underexplored and little understood. In our paper we broaden the debate on patient involvement, using insights from political science, more specifically from representative claims theory (Saward 2010). This theory helps to bring into view a wide range of possible representatives, namely all those who claim to represent a certain group, and provides the tools to better understand the varied nature of the basis of these claims and how we should judge them in terms of their contribution to democratic decision-making (e.g. ensuring equality and responsiveness of claims) (van de Bovenkamp & Vollaard 2018). In our paper we explore the case of representation of people with serious mental health problems in policy decision-making in the Netherlands. Our study is based on qualitative research using interviews, observations and document analysis. In our results we focus on the different representative claims that are made, the basis of these claims, how these claims are shaped by the institutional setting in which they are made including dominant power dynamics and the strategies used to convey these claims. In the discussion of the paper we reflect on how insights from political science can contribute to the debate about healthcare democracy and how it can bring to the fore issues that are currently underexplored in the field of healthcare.