The Union has always been interested in and has promoted communities affected by tuberculosis (TB). The most notable example is the time and space dedicated annually to TB-affected communities at The Union World Conference on Lung Health, known as Community Connect.
In this respect, The Union is pleased to be included in this large multi-author paper led by Nandita Venkatesan and Lena Faust from the Community Advisory Board at the McGill International TB Centre in Canada and the London School of Hygiene and Tropical Medicine in the UK, respectively.
While the authors of the paper acknowledge the important progress made to date regarding community engagement in TB, the field continues to fall short in meaningfully engaging communities in TB research. The authors discuss the persistent gaps and obstacles to meaningful engagement that include the stigma that surrounds the disease, the general absence of community representation in research and the current lack of any suitable framework.
They highlight the core components of TB-specific standards for engagement in research that should include 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. Communities need to be engaged in the research process as early as possible, and ideally before research priorities and directions are set. The scope of the research should encompass questions and outputs that are relevant to the community.
There needs to be good knowledge sharing between researchers and the community as well as a framework to ensure that community engagement processes are built, strengthened and sustained through adequate funding, training and relationship building.
“It is especially important that academic institutions take the initiative to facilitate community engagement in research, so that the necessary processes and support are in place for researchers and trainees to respectfully and meaningfully engage communities”, says one of the two leading authors, Lena Faust. Professor Anthony Harries, senior advisor at The Union and one of the co-authors of the paper, further adds: “This is an important and timely paper laying out a workable framework to engage people affected by TB in research. We need to now ‘walk the talk’ and ensure that moving forward our practice matches our rhetoric”.
For those interested in reading more about this, please see the paper at https://doi.org/10.1371/journal.pgph.0004437