Community engagement

Affected community members must be recognized as key partners throughout all stages of TB research, including agenda setting, study design, ethics approval, study implementation, and dissemination. Effective community engagement goes beyond consultation; it requires the meaningful involvement of affected community members in decision-making.

The 2024 WHO Guidance for Best Practices for Clinical Trials (1) underscores that community engagement should be:

  • central to trial planning and implementation to ensure that research meets public needs and maintains trust; and
  • continuous and iterative, rather than limited to sporadic campaigns immediately before trial initiation to ensure adequate opportunity to influence decision-making.

Similarly, the 2023 WHO Guidance on Engagement of Communities and Civil Society to End TB emphasizes that community involvement strengthens the quality, acceptability, and uptake of TB research and innovation (2). The 2020 WHO Global Strategy for TB Research and Innovation also calls for funders and sponsors to invest in stronger community engagement in TB clinical research (3). The principle of community engagement is additionally grounded in the human right to participate in science, which affirms that all people—including those affected by TB—should have the opportunity to contribute to, shape, and benefit from scientific research (4).

Community engagement ensures that research is asking the right questions in the right way and is grounded in the lived experience and priorities of those most affected by TB. Affected community members who participate meaningfully in research are well-positioned to advocate for policy change, promote equitable access to new tools, and help build end‑user demand. Members of the local community where a trial is conducted also play a key role in participant recruitment and support for retention (see ​the​ recruitment and retention section).

Community Advisory Boards (CABs) are a cornerstone of community engagement in research and may operate at the study, institutional, or national levels. With regards to TB research, the Global TB CAB is the largest internationally recognized CAB that acts in an advisory capacity to research and product sponsors to help ensure that research and innovations address the needs and priorities of TB-affected communities (5). Multilevel engagement of community partners is especially important for large, multicentre, multinational trials. Recognizing the unique ability of pregnant and breastfeeding women to assess risks and benefits that affect them, their meaningful inclusion on ethics review boards or committees is essential.

The necessary approach to support robust community engagement in TB research is emphasized in the 2025 WHO call to action, Accelerating research to end tuberculosis in pregnant and lactating women, and further detailed in the associated consensus statement (6, 7). This approach is aligned with the 2024 Community Consensus on the Earlier Inclusion of Pregnant Women and Persons in TB Research published by 16 representatives of communities affected by TB and is reinforced by a 2025 peer-reviewed publication by over 50 TB community advocates and researchers calling for communities affected by TB to be engaged as essential partners in research (8, 9).

The principles of effective community engagement that arise across these four documents are as follows:

  1. Build equitable parternships from the outset
    • Establish mutually beneficial, reciprocal relationships with affected communities that address existing power imbalances.
    • Ensure pregnant and breastfeeding women can meaningfully shape decisions that directly affect their participation in research, including their safety, and care. 
  2. Engage affected communities early, continuously, and across the full research lifecycle
    • Involve affected community members from agenda setting through protocol design, implementation, analysis, dissemination, and policy translation.
    • Apply community engagement principles to research types beyond clinical trials—including qualitative, mixed‑methods, observational, preclinical, and implementation research.
  3. Develop formalized, transparent strategies for engagement of the community by research teams
    • Co‑create a standard operating procedure with clear roles, responsibilities, and timelines, and include community members on protocol and study teams.
    • Maintain regular, transparent communication using clear language and accommodating time-zone and accessibility needs (assigning a dedicated study team member responsible for community engagement and liaising with community partners can be helpful).
  4. Strengthen and support CABs
    • When establishing a new CAB, ensure diverse representation, including TB survivors (especially those affected during pregnancy, postpartum, or adolescence), family members of those affected by TB, local healthcare workers, and community and faith leaders.
    • Provide dedicated training and onboarding, including content specific to TB in pregnancy and lactation (CABLab is an example of an online research literacy training programme available in English, French, and Russian) (10).
  5. Ensure adequate resourcing and long-term sustainability
    • Allocate a dedicated budget line for CAB operations, including for honoraria, transportation, childcare, meeting costs, and translation.
    • Support and strengthen existing CABs or community organizations where possible to promote sustained engagement beyond a single trial or study.

 

Resources

Accelerating research to end tuberculosis in pregnant and lactating women: a call to action

This call to action accompanies the consensus statement on the optimal and early inclusion of pregnant and lactating women in tuberculosis research and...

Guidance for best practices for clinical trials

This document responds to requests by the World Health Assembly to the Director-General in resolution WHA75.8 (2022) on strengthening clinical trials...

Guidance on engagement 
of communities and 
civil society to end 
tuberculosis

The importance of community and civil society engagement to end TB has been highlighted in various strategies and global commitments. The WHO End TB Strategy,...

References

  1. Guidance for best practices for clinical trials. Geneva: World Health Organization; 2024 (accessed 19 February 2026).  

  2. Guidance on engagement of communities and civil society to end tuberculosis.  Geneva: World Health Organization; 2023 (accessed 19 February 2026). 

  3. Global strategy for tuberculosis research and innovation.  Geneva: World Health Organization; 2020 

  4. Office of the High Commissioner for Human Rights. The right to access to and participate in science [website]. Geneva: United Nations (accessed 19 February 2026). 

  5. Global TB Community Advisory Board [website]. (accessed 19 February 2026). 

  6. Accelerating research to end tuberculosis in pregnant and lactating women: a call to action. Geneva: World Health Organization; 2025 (accessed 19 February 2025). 

  7. Optimal and early inclusion of pregnant and lactating women in tuberculosis research: consensus statement. Geneva: World Health Organization; 2025 (accessed 19 February 2025). 

  8. Washington, D.C. Community Consensus on the Earlier Inclusion of Pregnant Women and Persons in TB Research [website]. 2024 (accessed 19 February 2026). 

  9. Fighting tuberculosis hand in hand: A call to engage communities affected by TB as essential partners in research. PLOS Global Public Health. 2025;5(4):e0004437. Venkatesan N, Faust L, Lobo R, Enkh-Amgalan H, Kunor T, Sifumba Z et al.

  10. Treatment Action Group. CABLab [website] (accessed 19 February 2026).