Governing through community-based research: Lessons from the Canadian HIV research sector

Abstract

The "general public" and specific "communities" are increasingly being integrated into scientific decision-making. This shift emphasizes "scientific citizenship" and collaboration between interdisciplinary scientists, lay people, and multi-sector stakeholders (universities, healthcare, and government). The objective of this paper is to problematize these developments through a theoretically informed reading of empirical data that describes the consequences of bringing together actors in the Canadian HIV community-based research (CBR) movement. Drawing on Foucauldian "governmentality" the complex inner workings of the impetus to conduct collaborative research are explored. The analysis offered surfaces the ways in which a formalized approach to CBR, as promoted through state funding mechanisms, determines the structure and limits of engagement while simultaneously reinforcing the need for finer grained knowledge about marginalized communities. Here, discourses about risk merge with notions of "scientific citizenship" to implicate both researchers and communities in a process of governance.

Community-based participatory research in a heavily researched inner city neighbourhood: Perspectives of people who use drugs on their experiences as peer researchers

“…While our findings illustrate the considerable value that residents in a spatially stigmatized neighbourhood can place on CBPR methods, they also point to the potential for CBPR projects to re-enforce hierarchy and reproduce stigma, especially when CBPR principles are only partially implemented. These findings align with past research raising concerns about potential ethical issues in CBPR (Boyd 2008; Flicker et al, 2007; Flicker et al, 2009; Guta et al, 2013; Guta et al, 2014). In the context of a heavily researched and stigmatized neighborhood, participants re-affirmed the value of CBPR, emphasizing its potential to reduce stigma by facilitating deeper listening and the reduction of researcher bias.…”

“…The academic gaze cast on areas of concentrated inequality can intensify the socio-spatial stigma directed toward people living within these areas (Wacquant, 2009; Slater, 2013) while also leading to ‘research fatigue’ among community members (Clark, 2008; Neal et al, 2016). Over the past fifteen years, researchers have increasingly responded to these concerns through research integrating principles of community-based participatory research (CBPR), a shift in research praxis that has given rise to new forms of community engagement in research processes (Minkler, 2005; Minkler and Wallerstein, 2010; Guta et al, 2014). In particular, the participation of people from heavily researched communities, including PWUD, as ‘peer researchers’ working closely with academics within CBPR projects has created new opportunities within marginalized neighborhoods that carry with them potential benefits, risks, and ethical dilemmas.…”

“…This movement demanded the creation of programming and supports, “in fighting the fear, shame and stigma that keep us from fully participating in our communities and from accessing health services” (Canadian HIV/AIDS Legal Network, 2006, p.22). CBPR methods have been increasingly adopted in research with diverse groups, including PWUD (Souleymanov et al, 2016), men who have sex with men (Rhodes et al, 2011), people living with HIV/AIDS (Guta et al, 2014), and survivors of domestic violence (Malpass et al, 2016). …”

"Carrying Ibuprofen in the Bag": Priority Health Concerns of Latin American Migrants in Spain- A Participatory Qualitative Study

“…In spite of these limitations, we expect that our findings will contribute to stretch the limits of migrant health policies beyond their current focus on infectious diseases and individual lifestyle and will nurture critical thinking about the use of participatory approaches in health research. As the importance of accounting for diverse forms of knowledge is increasingly recognized in scientific circles [ 68 ] and the community engagement paradigm is growingly embraced in health research beyond its traditional focus on HIV [ 69 – 70 ], it its crucial to account for the lessons learnt and acknowledge the challenges posed, resources needed, and limitations of this increasingly popular approach [ 71 , 72 ].…”

Community centrality and social science research

“…In Canada, many social scientists watched as the theoretical developments of other countries often surpassed those of domestic practitioners. In Canada, we focused on applied research and state-driven models of CBR that were imbued with expectations around the incorporation of peer researchers who were valued not for their research training but for their lived experience (Guta et al 2014 ; Logie et al 2012 ). At the same time, we struggled with our home institutions to involve communities to the growing extent that all parties seemed to desire.…”