Venkatesan N, Faust L, Lobo R, Enkh-Amgalan H, Kunor T, Sifumba Z, Rane S, O'Brien K, Kumar B, Maimbolwa C N, Mayta M, Patel H, Huong L M, Heitkamp P, Huddart S, Romanowski K, Hiebert M, Zimmer A J, MacLean E L, Caceres-Cardenas G, Villa Castillo L, Black J, Batchu M, Tschampl C A, Rea E, Campbell T, Heffernan C, Long R, Raithby L, Daftary A, Chorna Y, Zheng A, Martinez L, Kulkarni S, Denkinger C M, Castro M D M, Sulis G, Furin J, McKenna L, Frick M, Nathavitharana R R, Oga-Omenka C, Ananthakrishnan R, Malar J, Ugarte-Gil C, Vandevelde W, Kerkhoff A D, Winarni P, Fox G, Nguyen T A, Teo A K J, Yapa H M, Pham N Y, Ratnasingham A, Bernays S, Trinh H D, Khan U, Alvarez G G, Deluca A, Nash M, Rucsineanu O, Vasiliu A, Stillo J, Nahid P, Pai M, Johnston J, Harries A D, Golub J E
Community Advisory Board, McGill International TB Centre, Montréal, Canada.
Stop TB Canada Network, Ottawa, Canada.
PLOS Glob Public Health. 2025 Apr 9;5(4):e0004437. doi: 10.1371/journal.pgph.0004437. eCollection 2025.
Tuberculosis (TB) is an infectious disease closely intertwined with stigma, discrimination, and the social determinants of health. Communities of people affected by TB are experts in their care pathways, but the TB field continues to fall short of meaningfully engaging communities in TB research. This is a missed opportunity to improve the quality, relevance, person-centeredness, positive impact, and sustainability of TB research outputs. We acknowledge the important progress that has been made to date regarding community engagement in TB, but emphasize persisting barriers to meaningful engagement, and the urgent need for updated and comprehensive TB-specific standards for such engagement in research. We highlight that core components of these standards should include the mobilisation of communities affected by TB, bilateral training in community engagement (for researchers and communities), as well as ensuring appropriate remuneration, representation of priority groups, and the use of non-stigmatising language in the engagement process. In addition, to meaningfully incorporate the experiences and expertise of communities affected by TB, their engagement in the research process should occur as early as possible, ideally before research priorities and directions are set, and the scope of the research should encompass questions and outputs relevant to the community. Further, knowledge-sharing between researchers and the community should be ensured, not only of the research outputs but also regarding the engagement process itself, so that lessons learned can be carried forward. Lastly, the sustainability of community engagement processes (whether within institutions or projects) should be ensured, including through adequate funding for such engagement and the training, community mobilisation and relationship-building that this requires.
结核病(TB)是一种与耻辱感、歧视以及健康的社会决定因素紧密交织的传染病。受结核病影响的人群是其护理途径方面的专家,但结核病领域在让社区有意义地参与结核病研究方面仍有欠缺。这是一个错失的机会,未能提高结核病研究成果的质量、相关性、以患者为中心的程度、积极影响和可持续性。我们承认迄今为止在结核病社区参与方面已经取得的重要进展,但强调在有意义的参与方面仍然存在障碍,并且迫切需要更新和全面的结核病研究社区参与特定标准。我们强调,这些标准的核心组成部分应包括动员受结核病影响的社区、开展社区参与方面的双边培训(针对研究人员和社区),以及确保适当的报酬、优先群体的代表性,并且在参与过程中使用无耻辱感的语言。此外,为了有意义地纳入受结核病影响社区的经验和专业知识,其在研究过程中的参与应尽早进行,理想情况是在确定研究重点和方向之前,并且研究范围应涵盖与社区相关的问题和产出。此外,应确保研究人员与社区之间的知识共享,不仅包括研究成果,还包括参与过程本身,以便能够吸取经验教训并加以传承。最后,应确保社区参与过程(无论是在机构内部还是项目中)的可持续性,包括为此类参与提供充足资金以及所需的培训、社区动员和关系建设。