Meaningful engagement of the community in TB research and development: best practice initiative from UNITE4TB

On Wednesday 9 November, the UNITE4TB Community Advisory Group (CAG) took part in the Community Connect session during this year’s Union World Conference on Lung Health. The CAG is led by the European Lung Foundation. CAG members explained how to engage the community in tuberculosis (TB) research and shared what they have achieved so far in UNITE4TB.

The event was co-chaired by Pippa Powell, ELF Director, and included a presentation from Clare Williams from ELF.

The importance of community engagement

Engaged and educated communities are important in projects that involve clinical trials, like UNITE4TB. Clinical trial sites often run more smoothly when they are paired with well-established and supported community engagement (CE) programmes. This is because they are in a better position to recruit good levels of trial participants, who are likely to take part for longer.

Strong relationships with community stakeholders and groups of advisors, such as UNITE4TB’s CAG, are critical for managing many trial-related issues. CE programmes can also activate local stakeholders as advocates for increased investment in Research and Development (R&D) for new tools, faster approval, and access to healthcare and educational resources.

The role of the CAG within UNITE4TB

The UNITE4TB CAG has been developed with representation from all regions involved in the project. The CAG members bring years of CE experience, providing feedback and suggestions during all aspects of the project through a collaborative and participatory approach.

Right from the start of the project, the CAG has provided advice and expertise to the consortium on all activities that involve communities and TB survivors. During the course of the project, the CAG will help to produce educational material aimed at communities affected by TB and will advise on the implementation of CE at trial sites.

One of the first activities the CAG has undertaken is to emphasise the importance of language used within the project. They have stressed the need to engage with communities in terms they understand, and how to communicate with trial participants regarding levels of commitment.

Top tips for ensuring community-centred engagement in R&D projects

During the Community Connect session at this year’s Union Conference, participants heard from several members of the UNITE4TB CAG. The group highlighted the following CE recommendations:

  • Engage with the community involved in your project early on – long before preparing the research protocol
  • Set up a CE structure, as has been done in UNITE4TB, to ensure continued communication with the community throughout the research
  • Make sure that all aspects of the research are clearly explained to the communities involved in language they can easily understand. Better understanding means better buy-in from the community
  • Ensure that all relevant materials are made available at the right time to the right people
  • Try to move away from the word “patient”. Rather use “research participants” or “research collaborators” – these terms provide a better sense of engagement
  • Remember that groups like CAGs are here to help researchers and scientists – they can bridge the gap between affected communities and researchers, making it easier to work together
  • Keep in mind that community insights will help to achieve good science and practical outcomes that will have a real impact

The key take-home message from the session: Meaningful engagement is a win-win for all! Communities are not passive recipients, they have great expertise to bring to the table in Research & Development projects and need to be meaningfully engaged.

Wrapping up the session, Blessina Kumar, UNITE4TB CAG member and CEO of The Global Coalition of TB Advocates said: “We’re very excited that within UNITE4TB we have been engaged right from the start. We have been given the space to share our views and thoughts. This is very exciting and very welcome.”

The original version of this article was first published on the UNITE4TB website.