Representation in participatory health care decision-making: Reflections on an Application-Oriented Model

Context The involvement of lay people in health care decision-making processes is now the norm in many countries. However, one important aspect of participation has not received sufficient attention in the past and remains underexplored: representation. Objective This paper explores the question of how public participation efforts in collective health care decision-making processes can attempt to aim for legitimate representation so that those individuals or groups not present can be taken into account in the decisions affecting them. This paper argues that to make decisions that effectively address those affected, representation needs to be seen as a relevant part of any participatory setting. To support this argument, the paper outlines the concepts of participation and representation and transfers them to health care contexts. Results A conceptual reflection on responsiveness and the characteristics of representative actors in representative-participatory settings is introduced, which could provide actors planning to conduct participatory health care projects with tools to reflect on the merits and possible flaws of participatory constellations. Patient or Public Contribution The paper contributes to improving public participation in health care decision-making.