Establishing the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS): Operationalizing Community-based Research in a Large National Quantitative Study

Abstract

BackgroundCommunity-based research has gained increasing recognition in health research over the last two decades. Such participatory research approaches are lauded for their ability to anchor research in lived experiences, ensuring cultural appropriateness, accessing local knowledge, reaching marginalized communities, building capacity, and facilitating research-to-action. While having these positive attributes, the community-based health research literature is predominantly composed of small projects, using qualitative methods, and set within geographically limited communities. Its use in larger health studies, including clinical trials and cohorts, is limited. We present the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS), a large-scale, multi-site, national, longitudinal quantitative study that has operationalized community-based research in all steps of the research process. Successes, challenges and further considerations are offered.DiscussionThrough the integration of community-based research principles, we have been successful in: facilitating a two-year long formative phase for this study; developing a novel survey instrument with national involvement; training 39 Peer Research Associates (PRAs); offering ongoing comprehensive support to PRAs; and engaging in an ongoing iterative community-based research process. Our community-based research approach within CHIWOS demanded that we be cognizant of challenges managing a large national team, inherent power imbalances and challenges with communication, compensation and volunteering considerations, and extensive delays in institutional processes. It is important to consider the iterative nature of community-based research and to work through tensions that emerge given the diverse perspectives of numerous team members.ConclusionsCommunity-based research, as an approach to large-scale quantitative health research projects, is an increasingly viable methodological option. Community-based research has several advantages that go hand-in-hand with its obstacles. We offer guidance on implementing this approach, such that the process can be better planned and result in success.

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How women living with HIV react and respond to learning about Canadian law that criminalises HIV non-disclosure: ‘how do you prove that you told?’

“…The WATCH Study was developed in response to the laws that criminalise HIV non-disclosure and the impact that this law has on women living with HIV in Canada. In line with the principles of community-based research (Israel et al 1998) and the meaningful involvement of women living with HIV in community-based research (Loutfy et al 2016), the research team comprised women living with HIV as lead investigators and research associates in addition to academic researchers, legal advocates and front-line CULTURE, HEALTH & SEXUALITY social service professionals. Community-based research is a well-recognised approach to doing research that is aimed at improving the health of marginalised individuals and communities (Cahill 2007;Olshansky et al 2005;Israel et al 1998;Patterson, Jackson and Edwards 2006).…”