Fighting tuberculosis hand in hand: A call to engage communities affected by TB as essential partners in research

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.

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Publication Details

Journal
PLOS Global Public Health
Published
2025-04-09
DOI
https://doi.org/10.1371/journal.pgph.0004437
Citations
2
Primary Topic
Tuberculosis Research and Epidemiology
Type
article
Field-Weighted Citation Impact
2.79
Controls
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article

Fighting tuberculosis hand in hand: A call to engage communities affected by TB as essential partners in research

Zolelwa Sifumba, Amy Zheng, María del Mar Castro, Emily MacLean et al.
2 citations
PLOS Global Public Health
Tuberculosis Research and Epidemiology
2.79
article

Fighting tuberculosis hand in hand: A call to engage communities affected by TB as essential partners in research

Zolelwa Sifumba, Amy Zheng, María del Mar Castro, Emily MacLean, Hiral Patel, César Ugarte‐Gil, Payam Nahid, R Ananthakrishnan, Swapnil Ulhas Rane, Oxana Rucsineanu, Madhukar Pai, Ruvandhi R. Nathavitharana, Sarah Bernays, Claudia Maria Denkinger, Petra Heitkamp, Guillermo Caceres-Cardenas, Jonathan Eric Golub, Mike Frick, Jennifer Furin, Fahim Ullah Khan, Madlen Nash, Luz Villa, Andrea N. DeLuca, Amrita Daftary, Richard Long, Jonathan Stillo, Kamila Romanowski, Lindsay McKenna, James C. Johnston, H. Manisha Yapa, Thu Anh Nguyen, James Malar, Greg J. Fox, Andrea Zimmer, Sophie Huddart, John L. Black, Sarah Kulkarni, Yuliya Chorna, Hieu Trinh, Kerry O’Brien, Giorgia Sulis, Roanna C. Lobo, Andrew D. Kerkhoff, Charity Oga‐Omenka, Courtney Heffernan, Cynthia A. Tschampl, Anthony Harries, Lena Faust, Gonzalo G. Alvarez, E Rea, Anca Vasiliù, Leonardo Martínez, Alvin Kuo Jing Teo, Wim Vandevelde, P. Winarni, Handaa Enkh-Amgalan, Mythili Batchu, B. Praveen Kumar, Teresa Isabelle Daza Campbell, Lan Huong, Nandini Venkatesan, Yen Pham Ngoc, Morgan R. Hiebert, T. Kunor, C N Maimbolwa, M Mayta, L Raithby, A Ratnasingham
article en
2 citations

Abstract

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.

PLOS Global Public HealthVol. 5(4)
Interior Health (CA), Boston University (US), Boston Medical Center (US), San Francisco General Hospital (US), The University of Sydney (AU), Advocates for Youth (US), Beth Israel Deaconess Medical Center (US), Southeastern University (US), Harvard University (US), University of British Columbia (CA), Johns Hopkins University (US), University of Waterloo (CA), University of Ottawa (CA), University of Alberta (CA), National University of Singapore (SG), University of California, San Francisco (US), Baylor College of Medicine (US), Toronto Public Health (CA), University of Toronto (CA), Wayne State University (US), York University (CA), Universidad Peruana Cayetano Heredia (PE), Nova Southeastern University (US), Heidelberg University (DE), Royal Prince Alfred Hospital (AU), Government of the United States of America (US), Ottawa Hospital (CA), Treatment Action Group (US), McGill University Health Centre (CA), University Hospital Heidelberg (DE), Vietnam Academy of Social Sciences (VN), BC Centre for Disease Control (CA), Westmead Hospital (AU), Advisory Board Company (United States) (US), London School of Hygiene & Tropical Medicine (GB), Ontario Stroke Network (CA), Universitas Esa Unggul (ID), Asociación para la Conservación de la Cuenca Amazónica (PE), World Health Organization (CH), Treasury Board of Canada Secretariat (CA), German Center for Infection Research (DE), International Union Against Tuberculosis and Lung Disease (FR), Centre for Global Health Research (CA), National HIV/AIDS/STI/TB Council (ZM), Together Enhancing Awareness Coalition (US), National University Health System (SG), Interactive Research and Development (PK), Harvard Global Health Institute (US), Community Partners (US), Ottawa Hospital Research Institute (CA), University of Manitoba (CA), McGill University (CA), Orano (United States) (US), The University of Texas Medical Branch at Galveston (US), International Union Against Tuberculosis and Lung Disease (US), Brandeis University (US)
Openalex Percentile: Top 11%
Tuberculosis Research and Epidemiology
2.79
DOIOpen Access PDFOpenAlex
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