WGNV Online Curric

Fundamentals Lesson 5 - text version

Who is involved in developing new tb tools?

Mike Frick, Treatment Action Group

Who are the various actors involved in developing new tools? There are a lot of different groups, people and institutions involved in developing new tools for TB, funders, sponsors, researchers, ethics, committees, regulatory agencies, and communities affected by and TB survivors are all important stakeholders in the research and development process. Your course guide has descriptions of all of these actors that you can read to learn more about how they contribute to research and development of new TB tools.

For advocacy purposes, it's important to know who the major and potential funders of TB research are. You'll learn more about TB funders as you go deeper into this course. These TB funders are often the targets of our advocacy because we're advocating that they increase their support or give more money to TB research and development.

Community engagement is also an important part of the research and development process, and it helps to improve the quality and integrity of research at all levels. In all stages, communities affected by TB, TB survivors, people who care for people with TB and community members in areas where TB is common should always be engaged in clinical research. And they should be engaged as more than just potential participants in clinical trials. Community members should serve as important advisors that influence research activities help to determine and set the direction of the overall research agenda, oversee the conduct of trials and are available to answer questions about research that people in their communities may have.

One way that community engagement is promoted in TB research is through the activity of community advisory boards or CABs. CABs were originally developed as part of HIV treatment and prevention trials and were established to bring communities affected by HIV and people living with HIV into direct conversation with researchers themselves, so that questions about clinical research areas of disagreement and other issues could be talked about openly and honestly. Community advisory boards exist to serve as a bridge between the scientific community and the communities in which TB research is conducted.

CABs are a standard part of HIV trials, and they are now a standard part of TB trials as well. One community advisory board involved in TB research is called the Global TB CAB. The Global TB CAB is made up of TB survivors and community members who are knowledgeable about TB research and development issues and take part in various technical activities and support of TB research.

The TB CAB and its members provide early input on the design of TB research studies, and they also advise on access strategies to ensure that the benefits of research or the ultimate tools that research is studying are available after the research process ends. The TB CAB puts out important statements in response to milestones in TB research that are largely reflective of viewpoints from TB survivors and affected communities across the globe.

The TB CAB's mission is to increase community involvement in TB research and to mobilize political will regarding key TB product development and access issues. The members of the TB CAB are volunteers, and they come from TB and HIV networks across Asia, Europe, Africa, and North and South America.

Because one of the core functions of the TB CAB is advocacy for new TB tools for TB survivors and community members, one of the best ways of becoming more deeply engaged in advocacy for new TB products is to build relationships with members of the Global TB CAB or even to join a CAB yourself. These CABs can be based at individual research sites. There are regional CABs for TB research and CABs connected to particular research networks. All of these are options for becoming more engaged in TB research and development.

If you're interested in joining a TB CAB, the best place to start is to see if there's TB research happening in your local community, and then connect yourself with the TB research site. Ask if they have a community advisory board or some kind of community engagement program and offer to volunteer or become a member.