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Addressing epistemic injustice in HIV research: a call for reporting guidelines on meaningful community engagement

INTRODUCTION: Despite the widely recognized ethical and practical benefits of community engagement in HIV research, epistemic injustice persists within the field. Namely, the knowledge held by communities disproportionately affected by HIV is systematically afforded less credibility than that of mor...

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Autores principales: Pantelic, Marija, Steinert, Janina I., Ayala, George, Sprague, Laurel, Chang, Judy, Thomas, Ruth Morgan, Nininahazwe, Cedric, Caswell, Georgina, Bach‐Mortensen, Anders M., Bourne, Adam
Formato: Online Artículo Texto
Lenguaje:English
Publicado: John Wiley and Sons Inc. 2022
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8771147/
https://www.ncbi.nlm.nih.gov/pubmed/35049122
http://dx.doi.org/10.1002/jia2.25880
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author Pantelic, Marija
Steinert, Janina I.
Ayala, George
Sprague, Laurel
Chang, Judy
Thomas, Ruth Morgan
Nininahazwe, Cedric
Caswell, Georgina
Bach‐Mortensen, Anders M.
Bourne, Adam
author_facet Pantelic, Marija
Steinert, Janina I.
Ayala, George
Sprague, Laurel
Chang, Judy
Thomas, Ruth Morgan
Nininahazwe, Cedric
Caswell, Georgina
Bach‐Mortensen, Anders M.
Bourne, Adam
author_sort Pantelic, Marija
collection PubMed
description INTRODUCTION: Despite the widely recognized ethical and practical benefits of community engagement in HIV research, epistemic injustice persists within the field. Namely, the knowledge held by communities disproportionately affected by HIV is systematically afforded less credibility than that of more privileged academic researchers. In order to illustrate what this looks like in practice, we synthesized the extent of reporting on community engagement within recent high‐impact HIV intervention research papers. However, we also posit that the HIV research sector has the potential to devise and showcase world‐leading examples of equitable research‐community partnerships and suggest actionable key steps to achieving this goal. DISCUSSION: In the absence of reporting requirements within the publishing process, it is difficult to infer whether and how the community have been consulted in the design, implementation, analysis and/or interpretation of findings. As an illustrative exercise, we offer a rapid synthesis of the extent of reporting on community engagement in HIV research from 2017 to 2019, which highlighted sporadic and very low rates of reporting of community engagement in recent high‐impact HIV intervention studies. Of note is that none of the included studies reported on community engagement through all stages of the research process. There were also discrepancies in how community involvement was reported. We provide three actionable recommendations to enhance reporting on community engagement in HIV research: (1) community‐led organizations, researchers and scientific journals should band together to develop, publish and require adherence to standardized guidelines for reporting on community involvement in HIV research; (2) research funders should (continue to) require details about how relevant communities have been engaged prior to the submission of funding requests; and (3) researchers should take proactive measures to describe their engagement with community organizations in a clear and transparent manner. CONCLUSIONS: There is a clear and urgent need for guidelines that facilitate transparent and consistent reporting on community engagement in HIV intervention research. Without standardized reporting requirements and accountability mechanisms within the research sector, the extent of meaningful community engagement cannot be established and may remain a catchphrase rather than reality.
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spelling pubmed-87711472022-01-24 Addressing epistemic injustice in HIV research: a call for reporting guidelines on meaningful community engagement Pantelic, Marija Steinert, Janina I. Ayala, George Sprague, Laurel Chang, Judy Thomas, Ruth Morgan Nininahazwe, Cedric Caswell, Georgina Bach‐Mortensen, Anders M. Bourne, Adam J Int AIDS Soc Commentary INTRODUCTION: Despite the widely recognized ethical and practical benefits of community engagement in HIV research, epistemic injustice persists within the field. Namely, the knowledge held by communities disproportionately affected by HIV is systematically afforded less credibility than that of more privileged academic researchers. In order to illustrate what this looks like in practice, we synthesized the extent of reporting on community engagement within recent high‐impact HIV intervention research papers. However, we also posit that the HIV research sector has the potential to devise and showcase world‐leading examples of equitable research‐community partnerships and suggest actionable key steps to achieving this goal. DISCUSSION: In the absence of reporting requirements within the publishing process, it is difficult to infer whether and how the community have been consulted in the design, implementation, analysis and/or interpretation of findings. As an illustrative exercise, we offer a rapid synthesis of the extent of reporting on community engagement in HIV research from 2017 to 2019, which highlighted sporadic and very low rates of reporting of community engagement in recent high‐impact HIV intervention studies. Of note is that none of the included studies reported on community engagement through all stages of the research process. There were also discrepancies in how community involvement was reported. We provide three actionable recommendations to enhance reporting on community engagement in HIV research: (1) community‐led organizations, researchers and scientific journals should band together to develop, publish and require adherence to standardized guidelines for reporting on community involvement in HIV research; (2) research funders should (continue to) require details about how relevant communities have been engaged prior to the submission of funding requests; and (3) researchers should take proactive measures to describe their engagement with community organizations in a clear and transparent manner. CONCLUSIONS: There is a clear and urgent need for guidelines that facilitate transparent and consistent reporting on community engagement in HIV intervention research. Without standardized reporting requirements and accountability mechanisms within the research sector, the extent of meaningful community engagement cannot be established and may remain a catchphrase rather than reality. John Wiley and Sons Inc. 2022-01-20 /pmc/articles/PMC8771147/ /pubmed/35049122 http://dx.doi.org/10.1002/jia2.25880 Text en © 2022 The Authors. Journal of the International AIDS Society published by John Wiley & Sons Ltd on behalf of the International AIDS Society. https://creativecommons.org/licenses/by/4.0/This is an open access article under the terms of the http://creativecommons.org/licenses/by/4.0/ (https://creativecommons.org/licenses/by/4.0/) License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.
spellingShingle Commentary
Pantelic, Marija
Steinert, Janina I.
Ayala, George
Sprague, Laurel
Chang, Judy
Thomas, Ruth Morgan
Nininahazwe, Cedric
Caswell, Georgina
Bach‐Mortensen, Anders M.
Bourne, Adam
Addressing epistemic injustice in HIV research: a call for reporting guidelines on meaningful community engagement
title Addressing epistemic injustice in HIV research: a call for reporting guidelines on meaningful community engagement
title_full Addressing epistemic injustice in HIV research: a call for reporting guidelines on meaningful community engagement
title_fullStr Addressing epistemic injustice in HIV research: a call for reporting guidelines on meaningful community engagement
title_full_unstemmed Addressing epistemic injustice in HIV research: a call for reporting guidelines on meaningful community engagement
title_short Addressing epistemic injustice in HIV research: a call for reporting guidelines on meaningful community engagement
title_sort addressing epistemic injustice in hiv research: a call for reporting guidelines on meaningful community engagement
topic Commentary
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8771147/
https://www.ncbi.nlm.nih.gov/pubmed/35049122
http://dx.doi.org/10.1002/jia2.25880
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