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Revealing disparities in representation in knowledge generation and guideline development
Carlos P B Almeida1,2, Afom T Andom3,4, Alain Casseus4,5
1Universidade Federal Do Sul E Sudeste Do Pará, Marabá, Brazil.
Global health experts from low- and lower-middle-income countries (LLMICs) are underrepresented in developing multidrug-resistant tuberculosis (MDR/RR-TB) guidelines and research. This knowledge gap impacts guideline relevance and can worsen health inequalities.
Area of Science:
- Global Health
- Infectious Disease Epidemiology
- Health Policy and Research
Background:
- Multidrug-resistant tuberculosis (MDR/RR-TB) poses a significant global health threat, predominantly impacting low- and lower-middle-income countries (LLMICs).
- The World Health Organization (WHO) provides crucial guidance for addressing MDR/RR-TB, yet the origin of this guidance and associated knowledge requires examination.
- This study investigates the representation of experts from high-burden countries in knowledge generation within the context of decolonizing global health.
Purpose of the Study:
- To assess the extent to which global health guidance and related knowledge on MDR/RR-TB are generated by experts from the most affected countries.
- To analyze the geographical distribution of experts involved in WHO MDR/RR-TB Guideline Development Groups (GDGs) and related peer-reviewed publications.
- To contextualize findings within the broader movement towards decolonizing global health and addressing epistemic injustice.
Main Methods:
- Examined the composition of WHO MDR/RR-TB treatment Guideline Development Groups (GDGs) between 2016 and 2022.
- Classified GDG members and authors of guideline-related publications (2016-2023) based on the MDR/RR-TB burden and World Bank income level of their affiliated countries.
- Searched PubMed for peer-reviewed publications derived from individual-patient-data meta-analyses relevant to WHO guideline reviews.
Main Results:
- During 2016-2022, 72.1% of the 33 high-burden MDR/RR-TB countries were LLMICs, with none being high-income.
- Only 30.3% of WHO GDG members and 10.4% of authors of related publications were from LLMICs.
- Representatives from high-burden MDR/RR-TB countries constituted 34.3% of WHO GDG members and 14.7% of publication authors.
Conclusions:
- A significant imbalance exists between the geographical distribution of MDR/RR-TB burden and the involvement of experts in knowledge and guidance generation.
- This disparity can lead to guideline rejection, funding issues, and exacerbated health inequalities due to a mismatch with local disease epidemiology.
- Reforms such as mandatory LLMIC participation in research funding and broader inclusion in guideline committees are proposed to address epistemic injustice and improve relevance.
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