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 and Bourne, Adam (2022) Addressing epistemic injustice in HIV research: a call for reporting guidelines on meaningful community engagement. Journal of the International AIDS Society, 25 (1). a25880 1-5. ISSN 1758-2652

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Abstract

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.

Item Type: Article
Keywords: GIPA, HIV trials, community, engagement, key populations, reporting guidelines, Community Participation, HIV Infections, Humans, Research Personnel, Social Responsibility
Schools and Departments: Brighton and Sussex Medical School > Division of Medical Education
SWORD Depositor: Mx Elements Account
Depositing User: Mx Elements Account
Date Deposited: 29 Apr 2022 15:19
Last Modified: 29 Apr 2022 15:30
URI: http://sro.sussex.ac.uk/id/eprint/105576

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