Health Education and Community Core (HECC)

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PROJECT SUMMARY/ABSTRACT Meaningful community engagement in HIV research supports the equitable collaborations between researchers, study participants, and the community. It brings together the theoretical and methodological expertise of academics and researchers, with the expertise of participants’ lived experiences and cultural- and context-rich perspectives, an orientation that has gained increasing credibility in addressing complex health and social problems. While the existence of Community Advisory Boards (CABs) in HIV research has been well-established, their contribution to the research process has typically been relegated to reviewing study materials and disseminating study findings. There is an unmet need for infrastructure and processes that ensure the meaningful inclusion and integration of community members and other stakeholders throughout all stages of the research process. A lack of meaningful community engagement has the potential to undermine not only effective study design and study procedures, but also the ability of findings to be implemented more broadly in the affected communities researchers ultimately seek to serve and benefit. As the PHACS Network has grown and matured over the past 14 years, so have the membership and scope of its CAB (established in 2008) and Young Adult CAB (established in 2013). They have provided vital input that has created new study questions, improved study procedures, and created more effective and innovative ways to disseminate findings. In 2013, an innovative multidisciplinary Health Education and Communication Committee was formed, comprised of CAB and YACAB members, clinical site staff, health educators, researchers, and investigators. This committee has been a model in PHACS for the integration of community engagement into research processes and has provided critical insights as PHACS has encountered unforeseen barriers to long-term study retention and data collection. Additionally, it has produced a wide array of innovative, community-driven health education resources, including an award-winning short documentary about perinatal HIV, a comic book series on maternal disclosure, whiteboard videos explaining informed consent and study procedures, and a web portal for young adult participants. To support the expanding scope of work and domains of interest in PHACS 2020, the innovative Health Education and Community Core (HECC) will formalize and expand these existing structures through targeted services that support the Research Projects, Emerging Research Pilots, and Cores and promote meaningful collaboration among researchers, clinical site staff, and CAB and YACAB members at all stages of the research process: when setting research priorities, crafting research questions, collecting data, analyzing and interpreting data. The HECC will also serve as an “innovation incubator” for novel efforts to communicate PHACS’ findings to participants and the community, thus modeling a more broadly adoptable feedback loop structure that includes and values community voices at all stages.