Revealing disparities in representation in knowledge generation and guideline development

Abstract

The important imbalance between the geographical distribution of lived experience with MDR/RR-TB and the distribution of individuals generating knowledge and guidance on treatment of MDR/RR-TB can have clinical and resource implications. Countries may reject or defer guideline adoption because of a mismatch between that guidance and local disease epidemiology. Funding conditioned on compliance with guidelines can exacerbate health inequalities. The movement to decolonize global health considers representation disparities as epistemic injustice, that is unfair treatment in the process of generating, sharing, or receiving knowledge. Reform is possible in many of the institutions involved in generation of global health knowledge, such as: meaningful participation of LLMICs in projects as a requirement for research funding, improved attention to the epistemic and geographical location of journal editorial staff, and broader inclusion in guidelines committees. Better alignment of participation in knowledge generation with burden of disease holds potential for reducing inequality and improving relevance of guidance for the lived experience with MDR/RR-TB.