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

Mona Loutfy, Saara Greene, V. Logan Kennedy, Johanna Lewis, Jamie Thomas-Pavanel, Tracey Conway, Alexandra De Pokomandy, Nadia O'Brien, Allison Carter, Wangari Tharao, Valerie Nicholson, Kerrigan Beaver, Danièle Dubuc, Jacqueline Gahagan, Karène Proulx-Boucher, Robert S. Hogg, Angela Kaida, Aranka Anema, Denise Becker, Lori BrottoClaudette Cardinal, Guillaume Colley, Erin Ding, Janice Duddy, Nada Gataric, Terry Howard, Shahab Jabbari, Evin Jones, Mary Kestler, Andrea Langlois, Viviane Lima, Elisa Lloyd-Smith, Melissa Medjuck, Cari Miller, Deborah Money, Gina Ogilvie, Sophie Patterson, Neora Pick, Eric Roth, Kate Salters, Margarite Sanchez, Jacquie Sas, Paul Sereda, Marcie Summers, Christina Tom, Clara Wang, Kath Webster, Wendy Zhang, Rahma Abdul-Noor, Jonathan Angel, Fatimatou Barry, Greta Bauer, Anita Benoit, Breklyn Bertozzi, Sheila Borton, Tammy Bourque, Jason Brophy, Ann Burchell, Allison Carlson, Lynne Cioppa, Jeffrey Cohen, Curtis Cooper, Jasmine Cotnam, Janette Cousineau, Marisol Desbiens, Annette Fraleigh, Brenda Gagnier, Claudine Gasingirwa, Trevor Hart, Shazia Islam, Charu Kaushic, Logan Kennedy, Desiree Kerr, Maxime Kiboyogo, Gladys Kwaramba, Lynne Leonard, Carmen Logie, Shari Margolese, Marvelous Muchenje, Mary Ndung'U, Kelly O'Brien, Charlene Ouellette, Jeff Powis, Corinna Quan, Janet Raboud, Anita Rachlis, Edward Ralph, Sean Rourke, Sergio Rueda, Roger Sandre, Fiona Smaill, Stephanie Smith, Tsitsi Tigere, Sharon Walmsley, Wendy Wobeser, Jessica Yee, Mark Yudin, Dada Mamvula Bakombo, Jean Guy Baril, Nora Butler Burke, Pierrette Clément, Janice Dayle, Mylène Fernet, Danielle Groleau, Aurélie Hot, Marina Klein, Carrie Martin, Lyne Massie, Brigitte Ménard, Joanne Otis, Doris Peltier, Alie Pierre, Danielle Rouleau, Édénia Savoie, Cécile Tremblay, Benoit Trottier, Sylvie Trottier, Christos Tsoukas, Catherine Hankins, Renee Masching, Susanna Ogunnaike-Cooke

Research output: Contribution to journalArticlepeer-review

52 Scopus citations

Abstract

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.

Original languageEnglish (US)
Article number101
JournalBMC Medical Research Methodology
Volume16
Issue number1
DOIs
StatePublished - Aug 19 2016
Externally publishedYes

Bibliographical note

Publisher Copyright:
© 2016 Loutfy et al.

Keywords

  • CHIWOS
  • Cohort study
  • Community-based research
  • HIV
  • Research methodology
  • Women

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