The relevance of different trust models for representation in patient organizations: conceptual considerations

Abstract

Abstract Background Trust within organizations is important for ensuring members’ acceptance of the organization’s activities and to expand their scope of action. Remarkably, Patient Organizations (POs) that often both function as a forum for self-help and represent patients on the health-political level, have been understudied in this respect. This paper analyzes the relation between trust and representation in POs. We distinguish between two models of representation originating from political theory: the trustee and delegate model and between two types of trust: horizontal and vertical trust. Methods Our theoretical approach is illustrated with an analysis of 13 interviews with representatives of German POs. Results We have found that the delegate model requires horizontal trust and the trustee model vertical trust. Both models: horizontal/delegate and vertical/trustee exist within single POs. Conclusions The representation process within POs demands a balancing act between inclusion of affected persons and strategically aggregating a clear-cut political claim. Trust plays in that process of coming from individual wishes to collective and political standpoints a major role both in terms of horizontal as well as vertical trust. Horizontal trust serves the communication between affected members, and vertical trust allows representatives to be decisive.

Keywords

• Collective decision-making
• Health care
• Patient Organization
• Patient participation
• Representation
• Germany