Community engagement group model in basic and biomedical research: lessons learned from the BEAT-HIV Delaney Collaboratory towards an HIV-1 cure
Abstract Introduction 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 the...
| Main Authors: | , , , , , , , , , , , , , |
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| Format: | Article |
| Language: | English |
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BMC
2023-06-01
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| Series: | Research Involvement and Engagement |
| Subjects: | |
| Online Access: | https://doi.org/10.1186/s40900-023-00449-y |
| _version_ | 1797806463382454272 |
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| author | Karine Dubé Beth Peterson Nora L. Jones Amy Onorato William B. Carter Christine Dannaway Steven Johnson Roy Hayes Marcus Hill Rease Maddox James L. Riley Jane Shull David Metzger Luis J. Montaner |
| author_facet | Karine Dubé Beth Peterson Nora L. Jones Amy Onorato William B. Carter Christine Dannaway Steven Johnson Roy Hayes Marcus Hill Rease Maddox James L. Riley Jane Shull David Metzger Luis J. Montaner |
| author_sort | Karine Dubé |
| collection | DOAJ |
| description | Abstract Introduction 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. Discussion 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. Conclusions 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. |
| first_indexed | 2024-03-13T06:07:42Z |
| format | Article |
| id | doaj.art-c05a97652564407397dcde2189d2a93a |
| institution | Directory Open Access Journal |
| issn | 2056-7529 |
| language | English |
| last_indexed | 2024-03-13T06:07:42Z |
| publishDate | 2023-06-01 |
| publisher | BMC |
| record_format | Article |
| series | Research Involvement and Engagement |
| spelling | doaj.art-c05a97652564407397dcde2189d2a93a2023-06-11T11:28:11ZengBMCResearch Involvement and Engagement2056-75292023-06-019111710.1186/s40900-023-00449-yCommunity engagement group model in basic and biomedical research: lessons learned from the BEAT-HIV Delaney Collaboratory towards an HIV-1 cureKarine Dubé0Beth Peterson1Nora L. Jones2Amy Onorato3William B. Carter4Christine Dannaway5Steven Johnson6Roy Hayes7Marcus Hill8Rease Maddox9James L. Riley10Jane Shull11David Metzger12Luis J. Montaner13Division of Infectious Diseases and Global Public Health, School of Medicine, University of California San DiegoWistar InstituteBEAT-HIV Delaney Collaboratory Community Advisory Board (CAB)Department of Psychiatry, University of PennsylvaniaBEAT-HIV Delaney Collaboratory Community Advisory Board (CAB)BEAT-HIV Delaney Collaboratory Community Advisory Board (CAB)BEAT-HIV Delaney Collaboratory Community Advisory Board (CAB)BEAT-HIV Delaney Collaboratory Community Advisory Board (CAB)BEAT-HIV Delaney Collaboratory Community Advisory Board (CAB)BEAT-HIV Delaney Collaboratory Community Advisory Board (CAB)Department of Microbiology, Perelman School of Medicine, University of PennsylvaniaPhiladelphia FIGHT Community Health CentersDepartment of Psychiatry, University of PennsylvaniaWistar InstituteAbstract Introduction 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. Discussion 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. Conclusions 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.https://doi.org/10.1186/s40900-023-00449-yCommunity engagementPatient and public involvementCommunity advisory boardCommunity-based organizationsAdvocacyHIV cure research |
| spellingShingle | Karine Dubé Beth Peterson Nora L. Jones Amy Onorato William B. Carter Christine Dannaway Steven Johnson Roy Hayes Marcus Hill Rease Maddox James L. Riley Jane Shull David Metzger Luis J. Montaner 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 Community engagement Patient and public involvement Community advisory board Community-based organizations Advocacy HIV cure research |
| title | Community engagement group model in basic and biomedical research: lessons learned from the BEAT-HIV Delaney Collaboratory towards an HIV-1 cure |
| title_full | Community engagement group model in basic and biomedical research: lessons learned from the BEAT-HIV Delaney Collaboratory towards an HIV-1 cure |
| title_fullStr | Community engagement group model in basic and biomedical research: lessons learned from the BEAT-HIV Delaney Collaboratory towards an HIV-1 cure |
| title_full_unstemmed | Community engagement group model in basic and biomedical research: lessons learned from the BEAT-HIV Delaney Collaboratory towards an HIV-1 cure |
| title_short | Community engagement group model in basic and biomedical research: lessons learned from the BEAT-HIV Delaney Collaboratory towards an HIV-1 cure |
| title_sort | community engagement group model in basic and biomedical research lessons learned from the beat hiv delaney collaboratory towards an hiv 1 cure |
| topic | Community engagement Patient and public involvement Community advisory board Community-based organizations Advocacy HIV cure research |
| url | https://doi.org/10.1186/s40900-023-00449-y |
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