Community engagement group model in basic and biomedical research: lessons learned from the BEAT-HIV Delaney Collaboratory towards an HIV-1 cure

Research Involvement and Engagement

Comment

Roy Hayes¹  William B. Carter¹  Steven Johnson¹  Marcus Hill¹  Rease Maddox¹  Christine Dannaway¹  Nora L. Jones¹  James L. Riley²  David Metzger³  Amy Onorato³  Karine Dubé⁴  Jane Shull⁵  Luis J. Montaner⁶  Beth Peterson⁷ 

[1] BEAT-HIV Delaney Collaboratory Community Advisory Board (CAB), Philadelphia, PA, USA;Department of Microbiology, Perelman School of Medicine, University of Pennsylvania, Philadelphia, PA, USA;Department of Psychiatry, University of Pennsylvania, Philadelphia, PA, USA;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;Philadelphia FIGHT Community Health Centers, Philadelphia, PA, USA;Wistar Institute, 3601 Spruce Street, Room 480, 19104, Philadelphia, PA, USA;Wistar Institute, 3601 Spruce Street, Room 480, 19104, Philadelphia, PA, USA;BEAT-HIV Delaney Collaboratory Community Advisory Board (CAB), Philadelphia, PA, USA;

关键词: Community engagement;    Patient and public involvement;    Community advisory board;    Community-based organizations;    Advocacy;    HIV cure research;    Lessons learned;   

DOI  :  10.1186/s40900-023-00449-y

 received in 2023-01-17, accepted in 2023-05-16,  发布年份 2023

来源: Springer

【 摘 要 】

IntroductionAchieving 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.DiscussionIn 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.ConclusionsOur 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.

【 授权许可】

CC BY   
© The Author(s) 2023

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