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

Background: Community-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. Discussion: Through 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. Conclusions: Community-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.</p

Test-retest reliability of key CHIWOS variables.

<p>Test-retest reliability of key CHIWOS variables.</p

CHIWOS provinces with target and actual enrolment numbers.

<p>Current Canadian HIV Women’s Sexual and Reproductive Cohort Study (CHIWOS) sites (in blue)–i.e. British Columbia, Ontario, and Quebec, and upcoming sites (in green)–i.e. Saskatchewan and Manitoba. Also shown are the target (dotted circles) and actual (dark circles) recruitment numbers per province.</p

Bivariate analysis of characteristics by perceived women-centred HIV care from HIV doctor.

<p>Bivariate analysis of characteristics by perceived women-centred HIV care from HIV doctor.</p

Perceived experience of women-centred HIV care of HIV doctor and clinic overall and by province of participants receiving HIV care (N = 1330).

<p>Perceived experience of women-centred HIV care of HIV doctor and clinic overall and by province of participants receiving HIV care (N = 1330).</p

CHIWOS questionnaire sections.

<p>CHIWOS questionnaire sections.</p