Decisiones médicas en enfermedades raras: de su definición estadística a su comprensión social

Abstract

Resumen Este ensayo teórico pretende analizar las decisiones médicas en el caso de las enfermedades raras. Una decisión médica es un proceso que orienta la producción de un diagnóstico o un tratamiento de salud, utilizando la información y evidencia disponible, en el cual muchas veces se incorporan las preferencias de los pacientes. En el caso de las enfermedades comunes o frecuentes, existe información clara y disponible sobre las distintas alternativas frente a un problema de salud. En el caso de las enfermedades raras, que están estadísticamente definidas como aquellas patologías que tienen prevalencia inferior a 1:2000, no suelen existir tales alternativas. Por la cronicidad y gravedad que este tipo de patologías suelen revestir, la ausencia de posibilidades se convierte en un problema que tiene dimensiones sanitarias y sociales. En este sentido, este artículo propone una transición de una definición estadística de las enfermedades a una definición social, que permita a futuras investigaciones conocer y profundizar en los procesos y efectos sanitarios, psicológicos y sociales sobre las enfermedades raras y su padecimiento.

COVID-19 and Dispositions of the Chilean Healthcare System: Sociomedical Networks in Care Decisions of Chronic Illnesses

“…This last concept was coined by Janet Shim (2010) and draws on cultural capital theories to account for how patient-provider interactions develop disparities in healthcare. The concept of cultural health capital articulates that "certain socially-transmitted and differentially distributed skills and resources are critical to the ability to effectively engage and communicate with clinical providers" (Shim, 2010, 2;see also;Schöngut-Grollmus and Energici, 2021).…”

“…We introduce the idea of sociomedical networks to interrogate the idea that medical decision-making is better understood from a theory of assemblages, than from theories of rational choice. On the one hand, EBM firmly maintains that the proper systematization of evidence can lead to health professionals and patients making better health decisions, while on the other hand systematization has not been the sole explanation for decision-making issues in health and medicine (Charles et al, 1999;Fernandez et al, 2019;Schöngut-Grollmus and Energici, 2021).…”

“…procedures (clinical trials, production of evidence, surgeries, and treatments, among others) (Schöngut-Grollmus and Energici, 2021).…”

“…These are assemblages created as an effect of interactions and associations between human agents (such as clinicians, nurses, patients, families, etc. ), nonhuman agents (e.g., protocols, evidence, infrastructure, medical devices, and drugs), and procedures (e.g., clinical trials, medical research, surgeries, and other medical interventions) (Schöngut-Grollmus and Energici, 2021). We understand the assembly of a sociomedical network through the notion of disposition, which we will develop further ahead, but which basically refers to the intrinsic feature that belongs to a particular object, individual, or process, understood as a possibility of behavior or capacity (Mumford, 2003).…”