Georgia Community Advisory Board: Supporting STREAM Trial participants for successful treatment outcomes

At a recent meeting of the STREAM Community Advisory Board (CAB), Georgia, held in Tbilisi at the National Center for Tuberculosis and Lung Diseases, participants had an opportunity to discuss STREAM trial progress, patient enrolment and adherence to treatment, as well as community engagement activities for the coming year.

Following the CAB meeting, Georgia CAB coordinators visited STREAM participants currently receiving treatment at the center. During these visits, participants discussed the burden of tuberculosis (TB) and CAB members shared their own personal experiences of TB. CAB members not only play an important role in the STREAM trial by acting as a bridge between affected communities and researchers, but also by providing crucial psychosocial support to trial participants. David Jiqia, healthcare management student and STREAM CAB coordinator explained, “It is helpful for trial participants to have people to talk to, especially people who have experience with TB. We know exactly what to say to help them overcome their negative thoughts, because we have been there, and if we haven’t been there personally, we have family members who have.”

The STREAM Georgia CAB meet for their bi-monthly meeting and discuss how they can continue to support trial participants.

The STREAM Georgia CAB meet for their bi-monthly meeting and discuss how they can continue to support trial participants.

“I first became a TB activist when I was 16 and my father developed multidrug-resistant TB (MDR-TB). For two years it was really hard. He hated the treatment and wanted to stop taking it many times, but with support of family and friends he successfully completed the treatment. The treatment for MDR-TB is changing and the STREAM trial offers patients the opportunity to achieve the desired result in a relatively short period of time which was unimaginable a few years ago,” explained David.

STREAM CAB Coordinator, Davit Alkhazashvili talked about his experience with TB, saying:

"I am a former TB patient. Nine years ago, I became ill with TB and from that moment my life changed radically. At that time, the only available treatment was the 24-month control regimen, which contained medicines that were difficult to tolerate. With the help of friends and relatives I was able to defeat TB, which was the beginning of my journey as a TB activist. Today I support TB affected people by giving them information about this disease and sharing my experience so that they know that they can overcome the disease. I help support them through the whole treatment process. There has been great progress in the world healthcare system and this is reflected in TB treatment. I wish success to STREAM and am grateful to all the people that are taking part in this process." 

During the visits, trial participants also shared their experience of the STREAM trial and discussed the side-effects they have encountered so far. While many STREAM participants report a positive experience of the trial, some still have difficulty completing their prescribed treatment. In order to ensure adherence rates remain high, the CAB members carry out home-vists, during which they listen to the concerns of participants, help to dispel myths about TB, and provide encouragement, drawing on their personal experiences of the disease.  

To read more about the community engagement activities carried out by the STREAM Community Advisory Boards, click here.

TREAT TB addresses the importance of community engagement in MDR-TB clinical trials in capacity building webinar

On December 6, 2018, TREAT TB  hosted a webinar aimed at strengthening capacity to conduct high-quality clinical trials for multidrug-resistant tuberculosis (MDR-TB). This webinar focussed on issues relating to community engagement in MDR-TB clinical trials and featured a presentation from Dr. Ezio Tavora dos Santos Filho, STREAM Community Engagement Coordinator from REDE-TB, followed by a question and answer session. Approximately 40 participants from various organisations including TB Alliance, SPRINT TB, Vital Strategies, and REDE-TB, as well as Community Advisory Board (CAB) members from several STREAM sites took part in this session. 

Dr. Tavora explained that community engagement not only facilitates communication but also encourages cooperation among multiple stakeholders, including affected communities, researchers, developers, and governments. It aims to bridge the gap between the community and researchers and, as a result, provides the optimal environment for the successful implementation of a clinical trial.

Dr. Tavora highlighted the fact that community engagement is an ethical requirement and serves as an accountability mechanism to society, governments and donors, study participants and affected communities. As such, community engagement should be included as part of all clinical trials, however this is often rarely the case. In order to increase the practice of community engagement in clinical trials, it is paramount that we raise awareness among the research community about the importance and benefits of community engagement.

In order to successfully include community engagement in a trial, it is important to engage the community early and throughout the duration of the research process. The webinar highlighted the importance of avoiding jargon and using clear and transparent language. Furthermore, Dr. Tavora explained that it is essential that community members have a say in the research agenda and that the results of the trial are shared and discussed with communities, even if they are not what were expected.  

Community engagement provides important insight for trial implementers regarding the local context and need within the community. This webinar highlighted the role of the CAB as an effective way to implement community engagement and used the STREAM CABs as a positive example.

To watch the full webinar and find Dr. Tavora’s presentation, please click here.

TREAT TB’s MDR-TB clinical trial capacity building webinar series will continue over the coming months, with webinars scheduled for January, March, and May 2019. Future topics to be addressed include regulatory requirements, institutional review boards and ethics approval, and laboratory strengthening, among others.

STREAM Community Advisory Board holds community outreach event to raise awareness about TB and HIV, in Durban, South Africa

Earlier this year, the STREAM Community Advisory Board (CAB) in Durban, South Africa carried out a community outreach event, ‘Our Responsibility. If not infected you are affected’. The event was held at Zinto Cele Park, Umlazi, and sought to raise awareness about tuberculosis (TB), multidrug-resistant TB (MDR-TB), HIV, and TB clinical trials, which are ongoing at the site, including the STREAM trial.

Community members gathered at the outreach event to learn about TB, MDR-TB and HIV.

Community members gathered at the outreach event to learn about TB, MDR-TB and HIV.

The event was well attended with representatives from local NGOs, religious and traditional leaders, as well as TB stakeholders, including the TB coordinator from the municipal Department of Health. 

During the course of the day, CAB members gave talks on TB and MDR-TB. Participants gathered to listen to CAB members and TB experts provide much needed information about TB and HIV. Experts were also available to answer questions about STREAM and other clinical trials.

CAB members, TB/HIV experts and community members discuss key issues at the event.

CAB members, TB/HIV experts and community members discuss key issues at the event.

As well as providing key information about prevention, screening was also conducted during the day. Neighboring communities of Umlazi D section received home visits from the local Community Care Givers and the CAB members, during which they addressed prevention and treatment of TB, MDR-TB, and HIV and provided the opportunity for families to be screened.

Read more about TREAT TB’s Community Engagement work, here.

CAB members begin home visits for STREAM trial participants in Ahmedabad, India

As part of their community engagement activities, the Community Advisory Board (CAB) at the STREAM trial site in Ahmedabad, India, recently began home visits to provide crucial psychosocial support for STREAM participants and their families.

For the first time, the two STREAM sites in India - the National Institute for Research in Tuberculosis (NIRT) based in Chennai, and B. J. Medical College (BJMC) in Ahmedabad - have integrated community engagement into their approach to a clinical trial. Community engagement activities at the two sites are planned and led by the STREAM CABs and, during early meetings, members of the Ahmedabad CAB decided to prioritize home visits to trial participants in their annual work plan.

Home visits provide CAB members with the opportunity to give direct support to trial participants and discuss their experience of tuberculosis and the STREAM trial. They not only provide much needed support for affected families, but also offer CAB members insight into each family’s unique situation. This is invaluable for both CAB members and families, as it means that the support offered to trial participants and their families can be tailored to their needs.

STREAM CAB members visit trial participants in Ahmedabad.

STREAM CAB members visit trial participants in Ahmedabad.

Community Engagement is critical for clinical trials because it helps to create a collaborative relationship between the community and trial implementers. It establishes a direct feedback link between the two groups and helps ensure that affected communities are aware of the objectives of the trial, while also understanding how it will be implemented. Community engagement also creates a sense of trial ownership in affected communities and prepares them to receive and disseminate trial results when they become available.  

STREAM’s community engagement activities are supported by USAID and are expected to continue for the duration of the trial.

Find more information on TREAT TB and community engagement, here.