What lessons it might teach us? Community engagement in HIV research

Abstract

Purpose of reviewPartnerships between academia and the community led to historic advances in HIV and paved the way for ongoing community engagement in research. Three decades later, we review the state of community engagement in HIV research, discuss best practices as supported by literature, explore innovations, and identify ongoing gaps in knowledge. Recent findingsThe community of people living with and at risk for HIV remains actively involved in the performance of HIV research. However, the extent of participation is highly variable despite long standing and established principles and guidelines of good participatory practices (GPP) and community-based participatory research (CBPR). Current literature reveals that known barriers to successful community engagement continue to exist such as power differences, and poor scientific or cultural competency literacy. Several high-quality studies share their experiences overcoming these barriers and demonstrate the potential of CBPR through reporting of qualitative and quantitative outcomes. SummaryGreater time and attention should be placed on the development of community engagement in HIV research. A large body of literature, including innovative cross-cutting approaches, exists to guide and inform best practices and mitigate common barriers. However, we recognize that true growth and expansion of CBPR within HIV and in other fields will require a greater breadth of research reporting qualitative and quantitative outcomes. Keywords community-based participatory research, community engagement, good participatory practices, HIV research family, activists refusing to be passive 'victims' of AIDS embraced self-empowerment and effectively organized. The Denver Principles formed in 1983, served as the foundation of the activist movement and detailed how people living with HIV expect to be treated, how PLWH should respond to the AIDS crisis and the human rights they demand (Table 1) [1,5,6].To address the ongoing outcry of activists, the National Institutes of Allergy and Infectious Diseases recommended including community members at AIDS Clinical Trials Group (ACTG) meetings [7].

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“…These distinct views can sometimes cause tensions between stakeholders, documented in several fields of medical research ( 2 – 4 ). These fields include HIV research, despite an historical commitment to empowering affected communities ( 5 ). For instance, the Greater Involvement of People Living with HIV principles, formulated in 1994, bolstered the development of community-based participatory research.…”

“…For instance, the Greater Involvement of People Living with HIV principles, formulated in 1994, bolstered the development of community-based participatory research. Still, medical researchers often apply these principles inconsistently, or invoke them strategically ( 5 ).…”

“…In 2015, they appointed a “PE agent” (PhD in anthropology) to form a patient advisory committee (the I-Score Consulting Team, or the Team) and design a PE Project by operationalizing CIHR/SPOR’s Guiding Principles (for details, see Lessard et al ( 7 )). These principles were chosen as “co-build” and “inclusiveness” specifically addressed researchers’ concerns about, respectively, PROM development (the need to ensure the PROM reflected user concerns ( 6 )), and HIV research (the underrepresentation of certain groups, including women ( 5 , 8 )). In addition, the CIHR has a national network of PE practitioners, which was seen as a potential resource for our project.…”