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.
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.
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.