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

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posted on 2022-09-19, 23:53 authored by M Pantelic, JI Steinert, G Ayala, L Sprague, J Chang, RM Thomas, C Nininahazwe, G Caswell, AM Bach-Mortensen, Adam BourneAdam Bourne
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.


Funding for preliminary searches and article screening was provided by Frontline AIDS. No other parts of this review were funded.


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Journal of the International AIDS Society





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John Wiley & Sons Ltd on behalf of the International AIDS Society



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© 2022 The Authors. This is an open access article under the terms of the Creative Commons Attribution License, which permits use, distribution and reproduction in any medium, provided the original work is properly cited.

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