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◆ Social science & medicine (1982)2026-08-04

'They (researchers) don't have to justify their presence, why do we have to justify ours?': The political economy of community advisory boards in tuberculosis research.

Duy Trinh-Hoang, Sarah Bernays

原始摘要(英文原文)· Original abstract
Community Advisory Boards (CABs), adopted from the HIV response, have become the most institutionalised form of community engagement in tuberculosis (TB) research. However, little work has examined the historical-political processes shaping their development or how these dynamics influence community participation in TB research governance. This qualitative study draws on 28 semi-structured interviews with TB advocates, community engagement practitioners, and TB CABs representatives across countries and levels of global health governance. Using the metaphor of "space" drawn from participatory development, the analysis examines how CABs have emerged, evolved, and operated within TB research over time. CABs were initially mobilised by HIV activists to create spaces within TB research, as broader TB social movements had proven difficult to cultivate. As the CAB model became increasingly institutionalised as a formal engagement mechanism, they were intended to become sites for nurturing TB advocates and enabling their participation in research decision-making. However, sustaining these activist ambitions remained precarious as TB CABs were under-resourced and their knowledge transmission emphasised the technical over the radical, narrowing engagement into more operational and manageable forms. Within these tightly managed spaces, the difficulty of demonstrating the value of CABs reflects how the struggle for power redistribution has shifted from the politics of representation to that of evidence. TB CABs embodies communities' agency and creativity to insert and assert their voice within a biomedical landscape that structures their participation unequally. Reframing CABs as political and relational spaces rather than instrumental mechanisms may strengthen their transformative potential within TB research and policy.
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'They (researchers) don't have to justify their presence, why do we have to justify ours?': The political economy of community advisory boards in tuberculosis research. — 科研速览 Science Skim