Have you ever benefitted from a vaccine that spared you a miserable illness? Or used medication that cured an infection or reduced the pain of a sprained joint? New means of prevention, treatment, and in some cases cures come from the world of research, but before any new medication or vaccine can go to market, it has to be tested in clinical trials. These trials would not be possible without the active support and partnership of many communities and stakeholders.
The HIV Vaccine Trials Network’s (HVTN’s) mission is to find a safe and effective preventive vaccine to stop the spread of HIV, a virus that infects some 35 million people worldwide. From its earliest days, the HVTN has recognized that community input and participation are integral in the search for a vaccine.
“Community engagement is at the heart of how this Network functions,” says Gail Broder, Associate Director of the HVTN’s Social Behavioral Science and Community Engagement Unit. “Community members in this Network have powerful voices; when they speak, the researchers listen.”
According to Dr. Michele Andrasik, HVTN's Director of Social & Behavioral Sciences and Community Engagement, “It is imperative that we center the community to ensure that, when an effective vaccine is developed, communities most in need will find it acceptable and uptake will be seamless.”
Giving community stakeholders a voice in the research that may be conducted in their communities is an involved process. One good tool for informing that process is a guidance document published by UNAIDS and AVAC entitled “Good Participatory Practice: Guidelines for biomedical HIV prevention trials (Version 2, 2011 ).” The document provides a step-by-step roadmap for researchers, showing them how to effectively involve communities as key players in research. The principles of good participatory practice (GPP) have been and continue to be at the heart of the work conducted by the HVTN since its formation. Network staff and community advisory board (CAB) members made valuable contributions to the initial edition of the GPP guidelines, and the changes reflected in the latest version, drawing on their own experience of doing research in community-based settings.
The principles of GPP are incorporated into the work of the HVTN and are built into the very structure of our work. All sites have Community Engagement and Recruitment staff responsible for outreach in their communities. Each year they submit detailed work plans to the Network, outlining how they will engage and educate community stakeholders. At the Network level, CAB members provide input on materials that will be used to explain clinical trials to the public, and they serve on protocol teams where they provide input into planned protocols from the outset of their design. CABs also provide a forum for significant dialogue between researchers and community members. For example, CABs often review Informed Consent documents – materials used to explain a research study, including any potential risks – to ensure they are written in a way that is understandable to the average person in their community.
At the heart of community engagement is integrity, accountability, and mutual respect. When these are held as the guiding principles of clinical research, and when community stakeholders are seen as full partners in the research process, we can continue the task of making our communities safer and healthier places for all of us. We look forward to the day when we can add a safe and effective vaccine to the toolbox of HIV prevention tools.
Sets the foundation for awareness, literacy, and support of HIV prevention and HIV clinical research locally
Builds upon community education to engage and support clinical trial participation
Builds upon community education and recruitment, to support continued study engagement by the local community and a positive trial experience by participants