Disrupting the Systems: Opportunities to Enhance Methodological Approaches to Address Socio-Structural Determinants of HIV and End the Epidemic Through Effective Community Engagement

Abstract

A world without HIV is only possible by addressing the socio-structural determinants of health. Our understanding of socio-structural determinants is constantly changing, and parallel changes must occur with the methodologies used to explain the drivers of the HIV epidemic. We argue for the need to engage communities in the planning, implementation, and dissemination of research on the socio-structural determinants of HIV. Community engagement should cross-cut various types of research including rigorous measurement development of socio-structural determinants and novel analytic techniques to model their role in the trajectory of the epidemic and the impact of interventions. Considering the role of place, we recommend collaboration between scientists and communities in the interpretation of results from studies that map HIV-related behaviors and movement. As we collectively delve into historically oppressive systems with colonial antecedents, we must be ready to challenge these systems and replace them with collaborative models. The success of research-driven HIV policy and programming will best be evaluated with methodologies derived from the insights of the very individuals that these policies and programs aim to serve.

Ending the HIV epidemic for all, not just some: structural racism as a fundamental but overlooked social-structural determinant of the US HIV epidemic

“…Notable examples of effective community-based collaborations include the integration of services provided by community-based pharmacists with those of medical providers to improve retention in care, rates of viral suppression, and adherence to antiretroviral medications among persons with HIV (PWHIV) [68][69][70]; community-engaged development of mobile HIV prevention apps for Black women [e.g., [71]] and Black sexual minority men; clinic-based strategies to improve care outcomes among PLWH experiencing homelessness and unstable housing [72], and concept mapping of multilevel resilience resources among adult Black PLWH in the Southern US [73 && ]. Recognizing the invaluable role of communitybased stakeholders in implementing EHE [66,74] and the need for 'multifactorial approach[es] accounting for the social, cultural, economic, and environmental factors that drive transmission of HIV' [74],…”

“…Recognizing the invaluable role of community-based stakeholders in implementing EHE [66,74] and the need for ‘multifactorial approach[es] accounting for the social, cultural, economic, and environmental factors that drive transmission of HIV’ [74], HIV advocates and other EHE implementers have begun to advocate for the addition of ‘Community Engagement’ as an integral fifth EHE pillar [75]. Moreover, bolstering the notion that communities benefit most from interventions borne from community advocacy, organizations such as the Black AIDS Institute [76] and United We Rise [77] initiatives promote community-based EHE programs that prioritize attention to inequitable social-structural realities, and that address persistent and disproportionate HIV inequities among Black US communities.…”

Adapting digital health interventions for the evolving HIV landscape: examples to support prevention and treatment research

“…Thoughtful community engagement, where representatives' voices are elevated, maximizes the likelihood that an intervention will resonate within new contexts and with new populations [46]. Beneficiaries and community partners, can be included in formal community advisory boards.…”

“…Beneficiaries and community partners, can be included in formal community advisory boards. Beneficiaries and community partners should be involved in all aspects of the adaptation process beginning at the planning stage, though implementation, and concluding with dissemination and scale-up [46]. Soliciting feedback from community members on intervention adaptation can also lead to more innovative and creative methods for engagement and recruitment [47]; deep community engagement have the potential to produce insights about true lived experiences that can inform the conduct of pragmatic trials in real-world settings.…”

Trauma, Mental Health Distress, and Infectious Disease Prevention Among Women Recently Released From Incarceration

“…Depressive symptomology and lifetime PTSD prevalence are also high at 44.6 (10) and 53 percent (11), respectively, compared to 12 (12) and 6 (13) percent in the general population. Pervasive levels of trauma are also associated with criminal legal system involvement itself (14) and social and structural determinants of health such as poverty, un-and under-employment, housing insecurity and homelessness, and healthcare stigma (15).…”