Description
Patients’ stories are more than anecdotal evidence, and they travel in often unexpected ways. This paper argues that the telling and the sharing of stories can constitute an engagement of a different quality to statistical information, and traces their affective potential in different instances of patient engagement in the field of rare disease. Here, we rely on the notion of ‘stories’ to capture the expert labour that goes into defining, translating, and representing rare disease across different sites from research and innovation, to eventual authorisation and the marketing of orphan drugs. The central question of the paper focuses on the work that stories do in the space of rare disease, and how they can act as a source of complex interactions in and around patient participation. We argue that the notion of ‘stories’ can connect different elements of a ‘patient journey’ in a new and productive way, especially also by going beyond the immediate act of telling of the stories in different venues. This connection shows that individualised stories can also have a structuring, disciplining effect on interactions, creating for instance a model of a ‘good’ rare disease patient within individualised care practices, written into policy expectations, and influencing the very definition of a particular rare condition. Tracing these stories through decision-making processes concerning orphan drugs allows for reflection on the transcendental performative and affective elements contained in these interactions, and also on the potential limits of these performances in a very closely circumscribed and heavily regulated arena.
