4206.0 - Community Engagement in HIV Research: A Systematic Review of Community Participation, Practice, and Processes in Ending the HIV Epidemic in the US

Program: HIV/AIDS

Session: Ending the HIV Epidemic 102 - Poster Presentation

Presenter: Shivesh Shourya

Authors: Christine Simon, Nikita Rao, Khadija El-Hazimy, Debbie Humphries

Abstract

Background

Community engagement in research (CEnR) has been pivotal in tailoring and enhancing research and implementation strategies to better serve people living with HIV and is central to the Ending the HIV Epidemic (EHE) initiative. While implementation research funded by the EHE require partnerships with community organizations, little is known about CEnR in HIV research more broadly. This systematic review explores the HIV literature to evaluate community engagement in HIV research, engagement practices and processes, and the geographic distribution of CEnR studies prior to and after the launch of the EHE initiative in 2018.

Methods

We conducted a systematic search across multiple databases including PubMed, Medline, and CINAHL to identify peer-reviewed HIV studies published between 2014 and 2024. Studies were included if they were written in English, conducted in the United States, and described community engagement or community-engaged approaches in the title and abstract. A total of 309 studies met the inclusion criteria and were included in the review. Data on publication details, study location, and community participation and engagement were extracted and analyzed.

Results

Preliminary analysis shows that most CEnR studies (75%) mention community engagement, but do not provide sufficient information to assess the extent of community engagement and participation in the research process. Less than one-quarter (24%) of the studies described a community engagement approach, and the remaining 1% were either community-based participatory research or community partnerships. We also found that most CEnR studies were clustered in the 57 EHE priority jurisdiction, highlighting the effect the EHE initiative may have on increasing CEnR in the US.

Conclusions

Our findings suggest that while community participation in HIV research has increased since the EHE initiative, more community involvement is needed throughout research process, particularly in establishing strong collaborative partnerships between academic researchers and community organizations. Additionally, there is a need for reporting guidelines specific to CEnR that clearly details the community engagement process and the role the community played in the research process. This can enhance transparency, promote accountability, and ensure communities are meaningfully represented and recognized for their contributions to HIV research and efforts to end the HIV epidemic.