Recommendations for Community Engagement in NIAID HIV/AIDS Clinical Trials
The Division of AIDS (DAIDS), National Institute of Allergy and Infectious Diseases and the HVTN understand the importance of including community stakeholders in research planning and implementation to ensure the integrity, relevance and acceptance of the research. The “Recommendations for Community Engagement in HIV/AIDS Clinical Trials Research,” developed by Community Partners, help guides community engagement efforts at the NIAID-funded networks and sites and is available on the HANC public website.
The Recommendations document was first developed in 2009 by Community Partners, a group of community representatives from across the NIH HIV/AIDS clinical research networks, and was recently updated. The document was originally intended to enhance the role of community in NIAID funded research; assist staff in working with their respective communities; foster stronger partnerships between staff and community; and harmonize community engagement practices across the NIH HIV/AIDS clinical research networks. The goals of Community Partners in revising the document, remain largely unchanged. The newer version is designed to help research staff and community representatives expand and deepen existing partnerships and forge new ones, with the ultimate goal of facilitating effective community engagement in all aspects of our HIV/AIDS clinical trials research.
The Recommendations can used in combination with other guidance tools such as Good Participatory Practice Guidelines (AVAC, UNAIDS), the Stakeholders Engagement Toolkit (FHI360) or any local guidance materials that may be available, as they are all based on similar principles and work toward a common goal – ensuring that community stakeholders engaged throughout the research process in a meaningful and sustainable way.
The Recommendations offer a framework or guideline for community engagement at the site and network level. It focuses primarily on the community advisory board (CAB) model, but recognizes that other forms of engagement are valuable and often necessary in conjunction with or in lieu of a CAB. It delineates the roles and responsibilities of staff and community throughout each stage of the research process, from initiation through results dissemination and site closure, taking the social and cultural context into consideration.
A number of training modules and resources have also been developed by Community Partners and the Be the Generation project to foster scientific and research literacy in the community. Through increased understanding and awareness, we hope to promote more satisfying and effective engagement. These training resources available on both the HANC public site and, for those working within the HVTN, the DAIDS Learning Portal.
The HVTN has developed meaningful partnerships in the communities where it conducts its research and the input and support of community contributes to its success.