Sherazaan Ismail

This session covered the importance of community engagement in research. It highlighted advantages to participation of communities at all levels of research, identified challenges that need to be addressed moving forward, and made recommendations for various stakeholders in the research process to ensure meaningful community involvement at all stages.

Dr. Stefan Baral (John’s Hopkins University) remarked on how academia could benefit from cross-disciplinary communication in ensuring that data is used in a more impactful way to communities. He used the example of improvements made to the PLHIV Stigma Index (2.0 launched in 2020) with the aim of standardizing data collection globally so that solutions to end stigma are informed by actionable data. Olena Stryzhak (Positive Women) highlighted the critical role of women living with HIV in research. Leading with the principles of inclusion and protection (of communities and individuals) develops trust, ensures safety, and makes it easier to facilitate a feedback loop between researchers and PLWH. Veriano De Souza Tetro Jr. (Brazilian Interdisciplinary AIDS Association) highlighted that it is important to engage communities from the phase of study design, and to have community representatives (democratically, independently elected) on IRBs. Results of research must benefit study participants and the broader community they come from, during and after the study period. Finally, Iwatutu Adewole (ATHENA Network) advocated for the inclusion of young people, especially young women in research. In addition, the flow of money, resources, and capacity building needs to be directed to these young people who are informing science.

A key point made was that communities can do work where academia can’t. Thus, capacity building in community organizations to be able to analyze and interpret data from academic studies is imperative. Furthermore, power dynamics between funders/researchers conducting studies and community stakeholders have been identified as barriers to effective collaboration. Communities and peer researchers should be compensated fairly for their contributions to research. Finally, failure to strengthen these partnerships results in financial loss when research cannot be implemented in communities (e.g. poor uptake) because of a lack of representation at every point in research, from planning to implementation and beyond.

Lauren Bailey

This session convened various experts, activists, and researchers on the importance of integrating community-based participatory methods in all stages of HIV research, particularly as it relates to stigma reduction and vulnerable populations. The panelists provided insights from their perspective sharing promising practices on how to engage communities meaningfully and ethically.

Admiral Rachel Levine, Assistant Secretary of the U.S. Department of Health and Human Services, opened the session by highlighting the need to identify effective interventions to reduce stigma through community-centric implementation research that will translate new discoveries into practice at the local level. Stefan Baral provided insight into how academia can engage communities in a meaningful, ethical way noting that, historically, research has been quite siloed between academic and community-led research and that communities need to lead the research with support from academics. He referenced the People Living with HIV Stigma Index as a key example of research that “broke the silo.” Olena Stryzhak brought a critical perspective representing women living with HIV in Ukraine detailing the women living with HIV-led approach to conducting the HIV Criminalization Scan in Eastern Europe and Central Asia. Veriano de Souza Terto Junior shared considerations needed when researching the LGBTQ community stating that protocols need to be more transparent for communities involved in research and the results need to benefit the communities. Iwatutu Adewole relayed the importance of including young people, particularly adolescent girls and young women, as active participants in research so their lived experiences and nuanced identities are accurately captured and reflected.

It is critical to breaking down the siloed approach to community-based research. The lived experience of the community and their full participation needs to be integrated into every aspect of research from protocol development to data sharing. We need to address the power dynamics going forward from both the academic and funding perspective. Stefan Baral recommended flipping the funding structures where academics are no longer the prime funding recipient but rather a sub-awardee to a community-led prime. Community members also need to be recognized and supported for their research contributions; a co-creation process can help facilitate a more balanced approach.