Community Engagement

Community engagement (CE) is an ethical obligation and an integral part of all TB research. It cannot be an afterthought but should be a fundamental part of how the research is conceived, designed, implemented and used by policy makers. Done well, CE improves trial implementation and participant outcomes by building a relationship of trust between affected communities and trial implementers. It also allows affected communities to participate in all stages of the research cycle – from setting the research agenda, to the design of clinical trials, through to evidence-based policy change based on research results.

STREAM supported a comprehensive program of CE at all Stage 2 sites.

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  • Community advisory boards (CABs) comprised of representatives from non-governmental and community-based organizations, TB survivors and other community representatives were established and supported as coordinating mechanisms for CE at all 13 trial sites.

  • Local CAB coordinators were chosen from CAB members, with the support of the trial team.

  • A community liaison/engagement officer was appointed at each site to act as a bridge between CAB members and the study site/team.

  • Funding was provided for CE activities developed by the CABs, including feedback to and from the study team regarding STREAM, stakeholder meetings, CAB member training and capacity building, attendance at health policy meetings, community outreach, psychosocial support for STREAM participants, and cross-site experience sharing.

  • Technical assistance and CE coordination was provided to CABs by Vital Strategies and partners, including REDE-TB and Wits Health Consortium.

This commitment to CE yielded important successes, but also highlighted areas for improvement to achieve lasting and meaningful impact from CE. Read a case study here. And to learn about all lessons learned click on the boxes below.

Illustration of a woman holding a child and a man wearing a CAB t-shirt.
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Community engagement in Chennai, India: Building trust to improve clinical trials

In 2017, when the STREAM clinical trial began at the National Institute for TB Research (NIRT) in Chennai, India, community engagement (CE) was a new idea. It wasn’t obvious to researchers how community members should be involved in the research process, and there was no community advisory board (CAB) to act as a bridge between researchers and the communities where STREAM was implemented. Today, the STREAM CAB is a valued partner for Chennai’s TB researchers and the national TB program (NTP). This remarkable journey was possible only because key partners invested in building a relationship of trust.

For STREAM, it was important to build trust among all CE partners. The study team needed to trust that the CAB is a unique and valuable partner in the trial and the CAB needed to trust that the study team would consider the views of the CAB and the community related to the trial.

The trust-building exercise began on day one. It was essential to ensure the CAB had the diverse and representative membership required to be a legitimate voice of the community. The STREAM CAB included people affected by TB, members from community-based organizations, and members from non-governmental organizations with many years of experience in TB. Their geographic reach covered a large region around Chennai. They worked at a grass roots level and they were experts in how TB can impact patients, with strong community ties.

We recommend the CAB to be a part of every research as far as TB is concerned because [the] CAB’s mission is very much aligned to the vision of National TB Program.

State TB Officer

Once the CAB was formed, it was important for the CAB and the study team to clearly define their roles related to CE for the trial. There was no “road map” for this, and like all relationships, it developed over time and relied upon building trust. The study team ensured the CAB understood the trial – things like the different treatment regimens and the main terms of the informed consent – and the CAB highlighted how they could support the trial through things like community outreach (to raise awareness of the trial) and psychosocial support for trial participants.

Concrete opportunities for collaboration between the CAB and the study team quickly arose. Through their outreach, CAB members helped raise awareness of the trial, which made it easier for the national TB program to refer patients from the program to the trial. The CAB held events in vulnerable communities that had never heard about research, improving the community’s understanding of TB and research, and helping to reduce stigma. The CAB talked to TB patients about TB, patient-centered care and infection control, empowering them to seek care and manage their illness. The success of these events was an important contributor to the respect and trust that now exist between the CAB and NIRT.

Chennai CAB Coordinator, Sister Mary Josephinal Francis (right) at the Street Theater event in Northern Chennai (September, 2020)
Chennai CAB Coordinator, Sister Mary Josephinal Francis (right) at the Street Theater event in Northern Chennai (September, 2020)

As the value of CE became more apparent, the study team continued to invest in capacity building for CAB members around research and TB concepts to improve the CAB’s ability to participate as equal partners in the trial. Webinars and trainings arranged by the Sponsor covering topics including the ethics of research and the WHO TB guidelines development process empowered CAB members to provide the study team with important input. And regular meetings between the CAB and the study team created a structured environment for sharing community input.

The STREAM experience has demonstrated to both researchers and communities that CE improves trial implementation and participant outcomes by building a relationship of trust. And the experience has just begun. Recently, NIRT has invited the CAB to consult on new studies being implemented at the Institute. In addition, the CAB is documenting its experience; extending the reach of its work by helping to establish an all-India CAB; and working with the NTP to improve the diagnosis and management of TB in Chennai. CAB members continue to draw on the international network of CE advocates they met through STREAM for technical and moral support. By working on research beyond STREAM and extending its community engagement partnerships and networks, the CAB hopes it will have an important impact well beyond STREAM.

Although it is treatable and curable, the reason that we are not able to end TB for so many centuries is because there is no commitment and comprehensive effort by the whole society. We are all trying to do it with our bits and pieces. When there is a concerted effort, we will succeed.

Sister Mary Josephinal Francis, Chennai CAB Coordinator