Researchers working with communities
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 Genevieve Meyer, International Project Manager in the HVTN’s Community Engagement Unit. “Community members in this Network have powerful voices; when they speak, the researchers listen.”
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.
According to Jim Maynard, HVTN’s Director of Communications and Community Engagement, “GPP acts as a road map for putting into practice the underlying principles of authentic community engagement in all stages of clinical research, principles that have been at the heart of the work we have done from our earliest days as a network.”
The principles of GPP are incorporated into the work of the HVTN and built into the very structure of site and Network level 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. Their plans might include community presentations and workshops for local community-based organizations. They may also plan public forums where senior research staff can talk about planned or ongoing trials, answer questions, and listen to concerns. Such forums are also used to share trial results when available, and to share related prevention trial information that could impact a community. At the Network level, CAB members provide input on materials that will be used to explain clinical trials to the public and serve on protocol teams, commenting on planned protocols from the outset of their design. CABs also provide a forum for significant dialogue between researchers and community members. For example, one of their tasks is to ensure that Informed Consent documents – materials used to explain a research study, including any potential risks – 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.