Scientists from The Wistar Institute in Philadelphia are proposing a new model for community engagement in HIV research that empowers communities and promotes greater equity and participation. The model, called the community engagement group (CEG), consists of a three-part structure involving a Community Advisory Board (CAB), a community nonprofit organization, and researchers.
Traditionally, researchers have relied on CABs to provide feedback and engage communities in studies. However, this model has limitations. The CEG model aims to overcome these limitations by creating a collaborative working unit at every stage of the research process. Unlike isolated advisory board models, the CEG model allows for broader reach, deeper trust, and credibility with the HIV community.
The CEG model established a partnership between HIV researchers at The Wistar Institute, the nonprofit AIDS services organization Philadelphia FIGHT, and the CAB. By combining these groups, the model ensures greater access and trust within the target community. The collaboration allows scientists and community members to work together, with the community making the research objectives their own.
According to William B. Carter, the chairman of the BEAT-HIV Community Advisory Board, the model is unique and dynamic because all stakeholders work in unison. He believes that the scientists dream up the roadmap for cure research, and the community helps make that dream a reality by providing their invaluable insights and experiences.
The case study published by the Montaner Team in the journal Research Involvement and Engagement highlights their experience with the CEG model. The case study details the decades-long relationship between HIV researchers and Philadelphia FIGHT and provides examples of specific projects and the lessons learned along the way.
The researchers are hopeful that other research programs, not just related to HIV-cure research, can adapt and benefit from their CEG model. By increasing community partnerships in ongoing research efforts, they aim to create a new, improved, and more intentional model for community engagement that promotes greater equity and roles for all stakeholders.
The work was supported by various institutions, including the National Institute of Allergies and Infectious Diseases, the National Institute of Mental Health, the National Institute of Neurological Disorders and Stroke, the National Institute on Drug Abuse, and The Robert I. Jacobs Fund of the Philadelphia Foundation.
The Wistar Institute, the first independent nonprofit biomedical research institute in the United States, has a legacy of leadership in cancer, infectious disease, and immunology research. The institute’s scientists are dedicated to solving some of the world’s most challenging health problems, and their early-stage discoveries have had a significant impact on improving global health.
In summary, the community engagement group model developed by researchers at The Wistar Institute offers a new approach to engage communities and promote greater equity and participation in HIV research. By working collaboratively with community advocates, nonprofit organizations, and researchers, the model aims to create a more inclusive and impactful research process. With its success in HIV research, the model holds promise for other areas of scientific inquiry and ongoing research efforts.
