Health decisions in Rare Diseases: dispositional approaches for new politics of evidence

Nicolas Schongut-Grollmus (Universidad Alberto Hurtado, Chile)

Panel: Rare diseases in health policies and public health

Abstract: This communication is a reflexive work on health decisions in the case of rare diseases. Health decisions are traditionally understood as the process where a diagnostic or treatment plan is formulated, taking in consideration the available evidence and information, where the preferences of the patients are often incorporated. In the case of common illnesses, patients usually have clear and available information on the different alternatives to a health problem. In the case of rare diseases, defined as those pathologies with a prevalence of less than 1:2000, usually there are no such alternatives.

Due to the chronicity and severity that these types of pathologies have, the absence of possibilities becomes a problem that has health and social dimensions. In prior research we have used the term socio-medical assemblages to identify the networks formed by three stress points that heavily affect decision-making in health: interactions between patients and practitioners, the dynamics of pharmaceutical markets, and the logics of evidence in medical research and randomized controlled trials. In the case of rare diseases, understood as a statistical anomalies, these assemblages are constituted in a completely different way: interactions between participating subjects is transformed, pharmaceutical markets find new ways to perform, and evidence and its evaluation cannot be understood through its traditional practices. Hence this communication proposes a transition from a statistical definition of rare diseases to a social definition, using Mumford’s idea of dispositional properties in health causality.