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

Abstract: 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.