Dubé Karine, Peterson Beth, Jones Nora L, Onorato Amy, Carter William B, Dannaway Christine, Johnson Steven, Hayes Roy, Hill Marcus, Maddox Rease, Riley James L, Shull Jane, Metzger David, Montaner Luis J
Division of Infectious Diseases and Global Public Health, School of Medicine, University of California San Diego, San Diego, CA, USA.
Health Policy and Management, UNC Gillings School of Global Public Health, Chapel Hill, NC, USA.
Res Involv Engagem. 2023 Jun 8;9(1):39. doi: 10.1186/s40900-023-00449-y.
Achieving effective community engagement has been an objective of U.S. National Institutes of Health-funded HIV research efforts, including participation of persons with HIV. Community Advisory Boards (CABs) have remained the predominant model for community engagement since their creation in 1989. As HIV cure-directed research efforts have grown into larger academic-industry partnerships directing resources toward both basic and clinical research under the Martin Delaney Collaboratories (MDC), community input models have also evolved. The BEAT-HIV MDC Collaboratory, based at The Wistar Institute in Philadelphia, United States, implemented a three-part model for community engagement that has shown success in providing greater impact for community engagement across basic, biomedical, and social sciences research efforts.
In this paper, we review the case study of the formation of the BEAT-HIV Community Engagement Group (CEG) model, starting with the historical partnership between The Wistar Institute as a basic research center and Philadelphia FIGHT as a not-for-profit community-based organization (CBO), and culminating with the growth of community engagement under the BEAT-HIV MDC. Second, we present the impact of a cooperative structure including a Community Advisory Board (CAB), CBO, and researchers through the BEAT-HIV CEG model, and highlight collaborative projects that demonstrate the potential strengths, challenges, and opportunities of this model. We also describe challenges and future opportunities for the use of the CEG model.
Our CEG model integrating a CBO, CAB and scientists could help move us towards the goal of effective, equitable and ethical engagement in HIV cure-directed research. In sharing our lessons learned, challenges and growing pains, we contribute to the science of community engagement into biomedical research efforts with an emphasis on HIV cure-directed research. Our documented experience with implementing the CEG supports greater discussion and independent implementation efforts for this model to engage communities into working teams in a way we find a meaningful, ethical, and sustainable model in support of basic, clinical/biomedical, social sciences and ethics research.
实现有效的社区参与一直是美国国立卫生研究院资助的艾滋病病毒研究工作的目标之一，包括艾滋病病毒感染者的参与。自1989年成立以来，社区咨询委员会一直是社区参与的主要模式。随着以治愈艾滋病病毒为目标的研究工作发展成为更大规模的学术-产业合作，将资源导向马丁·德莱尼合作实验室（MDC）下的基础研究和临床研究，社区参与模式也在不断演变。位于美国费城威斯塔研究所的“战胜艾滋病病毒MDC合作实验室”实施了一个三部分的社区参与模式，该模式已成功地在基础、生物医学和社会科学研究工作中为社区参与带来更大影响。
在本文中，我们回顾了“战胜艾滋病病毒社区参与小组”（CEG）模式形成的案例研究，从作为基础研究中心的威斯塔研究所与作为非营利性社区组织（CBO）的费城“抗击艾滋病”组织之间的历史合作开始，到“战胜艾滋病病毒MDC”下社区参与的发展。其次，我们介绍了通过“战胜艾滋病病毒CEG”模式，包括社区咨询委员会（CAB）、CBO和研究人员在内的合作结构的影响，并强调了展示该模式潜在优势、挑战和机遇的合作项目。我们还描述了使用CEG模式的挑战和未来机遇。
我们整合CBO、CAB和科学家的CEG模式有助于推动我们朝着在以治愈艾滋病病毒为目标的研究中进行有效、公平和符合伦理的参与这一目标前进。在分享我们的经验教训、挑战和成长的烦恼时，我们为将社区参与融入生物医学研究工作的科学做出了贡献，重点是针对治愈艾滋病病毒的研究。我们实施CEG的记录经验支持对此模式进行更多讨论和独立实施努力，以使社区以一种我们认为有意义、符合伦理且可持续的模式融入工作团队，以支持基础、临床/生物医学、社会科学和伦理学研究。
