title: Establishing the Canadian HIV Women's Sexual and Reproductive Health Cohort Study (CHIWOS): Operationalizing Community-based Research in a Large National Quantitative Study.
abstract: 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.
  
  
  
  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.
  
  
  
  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.
authors.affiliation: Women's College Research Institute, Women's College Hospital, University of Toronto, 76 Grenville St., Room 6415, Toronto, ON, Canada, M5S 1B2. mona.loutfy@wchospital.ca.|Department of Medicine and Institute of Health Policy, Management and Evaluation, University of Toronto, Toronto, Ontario, Canada. mona.loutfy@wchospital.ca.
authors.forename: Mona
authors.initials: M
authors.lastname: Loutfy
authors.affiliation: School of Social Work, McMaster University, Hamilton, Ontario, Canada.
authors.forename: Saara
authors.initials: S
authors.lastname: Greene
authors.affiliation: Women's College Research Institute, Women's College Hospital, University of Toronto, 76 Grenville St., Room 6415, Toronto, ON, Canada, M5S 1B2.
authors.forename: V Logan
authors.initials: VL
authors.lastname: Kennedy
authors.affiliation: Women's College Research Institute, Women's College Hospital, University of Toronto, 76 Grenville St., Room 6415, Toronto, ON, Canada, M5S 1B2.|Interdisciplinary Studies Program, York University, Toronto, Ontario, Canada.
authors.forename: Johanna
authors.initials: J
authors.lastname: Lewis
authors.affiliation: Women's College Research Institute, Women's College Hospital, University of Toronto, 76 Grenville St., Room 6415, Toronto, ON, Canada, M5S 1B2.
authors.forename: Jamie
authors.initials: J
authors.lastname: Thomas-Pavanel
authors.affiliation: Women's College Research Institute, Women's College Hospital, University of Toronto, 76 Grenville St., Room 6415, Toronto, ON, Canada, M5S 1B2.|International Community of Women living with HIV, North America (ICWNA) New Brunswick, New Jersey, USA.
authors.forename: Tracey
authors.initials: T
authors.lastname: Conway
authors.affiliation: Department of Family Medicine, McGill University, Montreal, Quebec, Canada.|Chronic Viral Illness Service, McGill University Health Centre, Montreal, Quebec, Canada.
authors.forename: Alexandra
authors.initials: A
authors.lastname: de Pokomandy
authors.affiliation: Department of Family Medicine, McGill University, Montreal, Quebec, Canada.|Chronic Viral Illness Service, McGill University Health Centre, Montreal, Quebec, Canada.
authors.forename: Nadia
authors.initials: N
authors.lastname: O'Brien
authors.affiliation: Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada.|British Columbia Centre for Excellence in HIV/AIDS, Vancouver, British Columbia, Canada.
authors.forename: Allison
authors.initials: A
authors.lastname: Carter
authors.affiliation: Women's Health in Women's Hands Community Health Centre, Toronto, Ontario, Canada.
authors.forename: Wangari
authors.initials: W
authors.lastname: Tharao
authors.affiliation: Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada.
authors.forename: Valerie
authors.initials: V
authors.lastname: Nicholson
authors.affiliation: Women's College Research Institute, Women's College Hospital, University of Toronto, 76 Grenville St., Room 6415, Toronto, ON, Canada, M5S 1B2.
authors.forename: Kerrigan
authors.initials: K
authors.lastname: Beaver
authors.affiliation: Chronic Viral Illness Service, McGill University Health Centre, Montreal, Quebec, Canada.
authors.forename: Danièle
authors.initials: D
authors.lastname: Dubuc
authors.affiliation: Health Promotion Division, Dalhousie University Halifax, Nova Scotia, Canada.
authors.forename: Jacqueline
authors.initials: J
authors.lastname: Gahagan
authors.affiliation: Chronic Viral Illness Service, McGill University Health Centre, Montreal, Quebec, Canada.
authors.forename: Karène
authors.initials: K
authors.lastname: Proulx-Boucher
authors.affiliation: Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada.|British Columbia Centre for Excellence in HIV/AIDS, Vancouver, British Columbia, Canada.
authors.forename: Robert S
authors.initials: RS
authors.lastname: Hogg
authors.affiliation: Faculty of Health Sciences, Simon Fraser University, Burnaby, British Columbia, Canada.
authors.forename: Angela
authors.initials: A
authors.lastname: Kaida
mesh_terms: D000328:Adult; D002170:Canada / Q000453:epidemiology; D015331:Cohort Studies; D055812:Community-Based Participatory Research / Q000379:methods / Q000706:statistics & numerical data*; D005260:Female; D015658:HIV Infections / Q000453:epidemiology / Q000503:physiopathology*; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D060728:Reproductive Health / Q000706:statistics & numerical data*; D012725:Sexual Behavior / Q000706:statistics & numerical data*; D011795:Surveys and Questionnaires; D014932:Women's Health Services / Q000706:statistics & numerical data*
keywords: CHIWOS; Cohort study; Community-based research; HIV; Research methodology; Women