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

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.

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Background

As an approach to research, community-based research (CBR) focuses on acknowledging the inequities that exist between researchers, participants and community members [1, 2]. It ensures that the research question, method, design and the utilization of the data are guided by the community [38]. In CBR, researchers and community members engage in partnerships that equally value lived experience and academic expertise in an attempt to minimize inequities [1]. Importantly, CBR attempts to ensure that results reflect the community’s vision of change [1, 9, 10]. The relevance of CBR findings in health research today is established through these partnerships and the creation of research that is translatable given the collaborative process [1, 11]. Despite these benefits, uptake has been stalled because of struggles to determine how to include the iterative nature of CBR into the rigorous process of health research [12, 12]. When used, CBR approaches are most commonly adopted in relatively small studies, conducted in a limited geographic area [21315]. The limited uptake is despite the fact that CBR has been found to improve research recruitment, response rates and retention [16], particularly among minority groups [17, 18]; to improve community investment in research; and to increase the uptake of the findings in the community [2, 19].

If health research is meant to improve health outcomes of all individuals, the historical absence of women from health research is potentially detrimental to women’s health [2, 1921]. CBR offers a critique of traditional biomedical research approaches where patriarchy and sexism have prevailed and potentiates an opportunity to address the knowledge gap related to women’s health [1]. As such, academics in the field of women’s health have started to engage in CBR and other forms of unconventional, participatory research [2226].

In the field of HIV, the systematic exclusion of women from clinical studies has been particularly problematic [19]. Given the rapid medical advances in HIV, the exclusion of women has yielded significant issues in their HIV care. Epidemiological HIV data of women remains relatively sparse despite the feminization of HIV; clinical understandings of women regarding dosage and toxicity to antiretroviral therapies are limited due to such treatments being tested in trials with a predominance of male participants and women-focused research is almost non-existent [19]. Due to the gendered realities of HIV, women living with HIV often possess unique care needs that go overlooked [27]. Furthermore, when insufficiently included, women’s unique considerations are rarely elicited [19]. These circumstances of unique need and community informant capacity in terms of study development potentiate an ideal situation for the use of CBR [28]. The aim of this paper is to share our research team’s experience with the process of initiating, developing, and implementing a large national longitudinal cohort study involving women with HIV using a CBR approach. It is our intention that we demonstrate to other quantitative health researchers that a CBR approach is feasible and beneficial within large health research projects.

Description of CHIWOS

The Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS) is a national, multi-site, inter-disciplinary, CBR, quantitative, longitudinal cohort study that seeks to understand whether and how women-centred HIV care (WCHC) [28] may improve health outcomes for women living with HIV in Canada. Cohort data collection for CHIWOS was launched in 2013 in British Columbia (BC), Ontario (ON), and Quebec (QC), with electronic, peer research associate (PRA)-driven data collection. PRAs are women with HIV who are hired and trained to conduct research; in this case: the recruitment, consenting and survey administration. As of May 1, 2015 1425 women with HIV were enrolled in CHIWOS and had completed the baseline interview questionnaire. Two additional time points are scheduled at 18 and 36 months (a complete description of CHIWOS can be found at www.chiwos.ca).

CHIWOS is working towards a flexible, transformative and action-oriented approach to women’s health research. CHIWOS’s goals are to address a gap in knowledge related to women and HIV in Canada from the perspective of women. The specific aims of CHIWOS are to estimate: 1) the proportion and patterns of, as well as the factors associated with, WCHC uptake, and 2) the effect of WCHC on their overall (quality of life), HIV [e.g., antiretroviral therapy (ART) use, viral suppression], women’s (e.g., cervical and breast cancer screening), mental (e.g., depression), sexual (e.g., sexual satisfaction), and reproductive (e.g., contraceptive use, pregnancy) health outcomes among women with HIV in Canada. CHIWOS has brought together a national, multi-disciplinary research team, drawing expertise and experience from various disciplines (Fig. 1). In addition to our CBR approach, CHIWOS is guided by critical feminist and social justice frameworks and considers social determinants of health and intersectionality perspective across the lifespan [2931].

Fig. 1
figure1

The CHIWOS Study Team Structure. A diagram illustrating the community-based research (CBR) team structure used by the CHIWOS Study Team. Developed during the formative phase of CHIWOS to ensure meaningful involvement of all stakeholders. The boxes identify the various groups and committees involved in the management of CHIWOS and the overarching structure of the Study Team

Discussion

Our team, including women with HIV, identified early on that in order to create meaningful knowledge on the health and care of women with HIV, a comprehensive understanding of community experiences and needs was essential and thus the vital need to use a CBR approach emerged. As our experience with CBR has evolved, we have been tasked with reflecting on how the study team has operationalized CBR principles, our successes, and our challenges from both academic and community lenses. Our joint perspective creates a comprehensive dialogue about the value of CBR, as we have formed a team with significant diversity, from clinicians to epidemiologists, research assistants to PRAs.

Conceptually, CHIWOS was born out of pursuing topics based on community identified needs and the potential impact for improving care for women with HIV. The newly formed CHIWOS team began the project by brainstorming and developing a study vision, mission, mandate and values (Table 1), all of which were led and informed by community expertise. Table 2 presents our theoretical and research frameworks and guiding principles, which include critical feminism, anti-oppression, intersectionality and social justice [2931]. This was followed by a two-year long formative phase, which included qualitative data collection with women from across the country to inform our understanding of WCHC. The CHIWOS team then embarked on a year-long CBR survey development process described elsewhere [32]. Community members, including trained PRAs and other women with HIV, were asked to pilot and revise the survey. After piloting the draft questionnaire, PRAs and participants were asked to describe their experience, and explain any concerns related to the survey. The crucial community feedback garnered from these discussions informed subsequent revisions, including: cutting sections that felt redundant, unjustifiably intrusive, or excessively long; rephrasing questions to better reflect the needs, understandings, and identities of women; and adjusting skip patterns to ensure the relevance of questions to particularly situated women. These insights were essential to informing the development of the final survey and, ultimately, the involvement of a wide inter-disciplinary team.

Table 1 CHIWOS Vision, Mission, Mandate & Core Values
Table 2 Theoretical and Research Approaches & Guiding Principles

A critical aspect of the CBR process was to work with and train PRAs, and importantly, to provide them with the support necessary to ensure their ongoing involvement in the project. A team of 8-28 PRAs was hired and trained in each province. A national team developed the curriculum for the training based on principles of participatory adult learning and the insights of modules developed for other studies. Provincial trainings were organized over several days to build relationships amongst the team members; review important concepts; discuss the CHIWOS project and its approach, research principles, and team structure; provide practical training around recruiting and obtaining consent from potential participants, administering the online survey instrument, accessing the supports available to PRAs, and other relevant information. An anonymous evaluation was solicited from the PRAs to inform subsequent trainings and ongoing learning opportunities. A secure online platform for PRA training and networking was also created for refresher training and newly hired PRAs. We also created a process through which PRAs connect on a regular basis with each other and provincial coordinators and investigators to provide input and receive updates, usually through monthly teleconference. The support provided to each PRA needed to be tailored to the unique needs of the individual. Understanding the needs of each PRA occurred over time and policies were developed and recorded in order to ensure that these strategies were upheld.

PRAs experienced challenges due to the varying expectations of what their new role would encompass. Consequently, the team had to be innovative in ensuring each PRA felt that their contributions were manageable and meaningful depending on each PRAs capacities and interests. In light of this, new opportunities were developed for the PRAs to be involved in the project in a variety of leadership capacities. Some of these positions include being National Management Team and Knowledge Translation and Exchange Working Group PRA Representatives. We have also learned that meaningful involvement and adequate support for PRAs must include appropriate compensation, recognition and acknowledgement. For any voluntary commitment there is no pressure or expectation that PRAs attend. This process has been challenging because, ideally, PRAs should be compensated for all of their work. The consequence of not being able to financially afford this ideal presents challenges to acknowledging all contributions.

Through the unique role of being a PRA, many women continue to experience the challenge of “wearing many hats”. On several occasions, PRAs have completed interviews with friends, family members or clients. Furthermore, they may be perceived and treated differently by women in the community based on their new PRA position within CHIWOS. These experiences also tie into the challenge of setting appropriate boundaries with participants and navigating the thin line that exists between these varying relationships due to the multiple roles of the PRA. CHIWOS has developed “Challenging Scenario Guidelines” to support PRAs experiencing challenges brought to the forefront throughout the project.

Despite these ups and downs, the CHIWOS PRAs are the heart of this project. In partnership with various clinical and community sites in each province, PRAs have led the national cohort data collection phase. Word of mouth, recruiting from their personal and professional networks and utilizing peer-driven recruitment strategies have been the most successful strategies. The community connections, experiences, and aptitudes of our PRAs have also enabled successful recruitment from many under-served and harder-to-reach communities. Consequently, our cohort is inclusive of trans people, women who have experience with sex work, First Nations, Métis and Inuit women, women with a history of incarceration, African, Caribbean and Black women, and women not accessing care.

While our successes can feasibly be implemented by future research teams where CBR is well suited, the challenges that we have encountered raise important considerations for how to resolve, or at least attempt to resolve, the tensions that ultimately emerge when taking a CBR approach to national research. A key tension that we continue to struggle with is the reality that our consultative process requires more time. This is poorly understood and accepted at a bureaucratic level. We have also experienced issues with PRA compensation at a bureaucratic level. These two challenges capture the team’s overall experience of navigating CBR within large academic settings that are unfamiliar with a CBR process. In consideration of planning a large-scale CBR project, it would be advisable to meet with leadership within your institution to ensure they understand and will fully support the CBR process.

Because CHIWOS was developed as a CBR project with a specific emphasis on equity and anti-oppressive approaches to research, power imbalances, such as decision-making roles, also occurred providing the research team with the opportunity to reflect and find solutions aimed to maximize decision-making equitability. The most effective solution was expanding communication. Establishing an understanding in the formative phase of each team member’s role, contributions, communication style, and skills was also particularly vital to the sustainability and success of this large, national CBR guided project.

Given the predominant quantitative expertise among the research team, there were also challenges in shifting toward a CBR approach that needed to be openly discussed. This entailed, and will continue to entail, ongoing reflective discussions that work toward identifying possible methodological and ethical tensions that often emerge when doing CBR that relies on multiple forms of knowledge [33]. These tensions are not easily resolvable, but our reflective attention to them reinforces and supports our accountability to enact the long list of critical feminist principles and core values that guide us in our research.

Conclusions

We believe that our reflections on our process of using CBR can generally be applicable to any health research studies; however, we acknowledge that the clinical and social complexity of HIV may result in some unique realities of CBR. CHIWOS offers new expertise on how to reframe health research approaches to women and HIV in keeping with the belief that research has the potential to transform the lives of communities through active engagement. We advocate that by academics, community members and participants sharing with and learning from each other, we can strengthen and develop important frameworks, principles and practices aimed at integrating the complex process of CBR into medical research. As others have previously stated, we also suggest that health research needs to be action-oriented, and not just undertaken simply for the sake of knowledge production [34]. Research can be re-conceptualized as a process, not just an outcome. CBR challenges us to consider how this process itself can be an agent of change through partnerships and capacity building [16].

Abbreviations

CHIWOS, Canadian HIV Women’s Sexual and Reproductive Health Cohort Study; ICWNA, International Community of Women living with HIV, North America; HIV/AIDS, Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome; PRAs, peer research associates; CBR, community-based research; CIHR, Canadian Institutes of Health Research; OHTN, Ontario HIV Treatment Network; NIH, National Institutes of Health; WCBR, women’s HIV CBR; NCRT, National Core Research Team; CABs, community advisory boards; GIPA/MIPA, greater and meaningful involvement of people living with HIV; MIWA, meaningful involvement of women living with HIV; BC, British Columbia; QC, Quebec; KTE, knowledge translation and exchange; CTN, Canadian HIV Trials Network; AHSC, Academic Health Science Centres; AFP, alternative funding plans; OCAP, ownership, control, access, and possession; CAAB-PAW, CHIWOS aboriginal advisory board-positive aboriginal women

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Acknowledgements

The Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS) Research Team would like to especially thank all of the women living with HIV who participate in the research and entrust CHIWOS with their experiences of HIV treatment, care, and support. We also thank the entire national team of Co-Investigators, Collaborators, and Peer Research Associates. We would like to acknowledge the three provincial Community Advisory Boards, and the national CHIWOS Aboriginal and African Caribbean and Black Advisory Boards, and our partnering organizations for supporting the study.

CHIWOS Research Team List

British Columbia: Aranka Anema (University of British Columbia), Denise Becker (Positive Living Society of British Columbia), Lori Brotto (University of British Columbia), Allison Carter (British Columbia Centre for Excellence in HIV/AIDS and Simon Fraser University), Claudette Cardinal (Simon Fraser University), Guillaume Colley (British Columbia Centre for Excellence in HIV/AIDS), Erin Ding (British Columbia Centre for Excellence), Janice Duddy (Pacific AIDS Network), Nada Gataric (British Columbia Centre for Excellence in HIV/AIDS), Robert S. Hogg (British Columbia Centre for Excellence in HIV/AIDS and Simon Fraser University), Terry Howard (Positive Living Society of British Columbia), Shahab Jabbari (British Columbia Centre for Excellence), Evin Jones (Pacific AIDS Network), Mary Kestler (Oak Tree Clinic, BC Womens Hospital and Health Centre), Andrea Langlois (Pacific AIDS Network), Viviane Lima (British Columbia Centre for Excellence in HIV/AIDS), Elisa Lloyd-Smith (Providence Health Care), Melissa Medjuck (Positive Womens Network), Cari Miller (Simon Fraser University), Deborah Money (Womens Health Research Institute), Valerie Nicholson (Simon Fraser University), Gina Ogilvie (British Columbia Centre for Disease Control), Sophie Patterson (Simon Fraser University), Neora Pick (Oak Tree Clinic, BC Womens Hospital and Health Centre), Eric Roth (University of Victoria), Kate Salters (Simon Fraser University), Margarite Sanchez (ViVA, Positive Living Society of British Columbia), Jacquie Sas (CIHR Canadian HIV Trials Network), Paul Sereda (British Columbia Centre for Excellence in HIV/AIDS), Marcie Summers (Positive Womens Network), Christina Tom (Simon Fraser University, BC), Clara Wang (British Columbia Centre for Excellence), Kath Webster (Simon Fraser University), Wendy Zhang (British Columbia Centre for Excellence in HIV/AIDS).

Ontario: Rahma Abdul-Noor (Womens College Research Institute), Jonathan Angel (Ottawa Hospital Research Institute), Fatimatou Barry (Womens College Research Institute), Greta Bauer (University of Western Ontario), Kerrigan Beaver (Womens College Research Institute), Anita Benoit (Womens College Research Institute), Breklyn Bertozzi (Womens College Research Institute), Sheila Borton (Womens College Research Institute), Tammy Bourque (Womens College Research Institute), Jason Brophy (Childrens Hospital of Eastern Ontario), Ann Burchell (Ontario HIV Treatment Network), Allison Carlson (Womens College Research Institute), Lynne Cioppa (Womens College Research Institute), Jeffrey Cohen (Windsor Regional Hospital), Tracey Conway (Womens College Research Institute), Curtis Cooper (Ottawa Hospital Research Institute), Jasmine Cotnam (Womens College Research Institute), Janette Cousineau (Womens College Research Institute), Marisol Desbiens (Womens College Research Institute), Annette Fraleigh (Womens College Research Institute), Brenda Gagnier (Womens College Research Institute), Claudine Gasingirwa (Womens College Research Institute), Saara Greene (McMaster University), Trevor Hart (Ryerson University), Shazia Islam (Womens College Research Institute), Charu Kaushic (McMaster University), Logan Kennedy (Womens College Research Institute), Desiree Kerr (Womens College Research Institute), Maxime Kiboyogo (McGill University Health Centre), Gladys Kwaramba (Womens College Research Institute), Lynne Leonard (University of Ottawa), Johanna Lewis (Womens College Research Institute), Carmen Logie (University of Toronto), Shari Margolese (Womens College Research Institute), Marvelous Muchenje (Womens Health in Womens Hands), Mary (Muthoni) Ndung’u (Womens College Research Institute), Kelly O’Brien (University of Toronto), Charlene Ouellette (Womens College Research Institute), Jeff Powis (Toronto East General Hospital), Corinna Quan (Windsor Regional Hospital), Janet Raboud (Ontario HIV Treatment Network), Anita Rachlis (Sunnybrook Health Science Centre), Edward Ralph (St. Josephs Health Care), Sean Rourke (Ontario HIV Treatment Network), Sergio Rueda (Ontario HIV Treatment Network), Roger Sandre (Haven Clinic), Fiona Smaill (McMaster University), Stephanie Smith (Womens College Research Institute), Tsitsi Tigere (Women’s College Research Institute), Wangari Tharao (Womens Health in Womens Hands), Sharon Walmsley (Toronto General Research Institute), Wendy Wobeser (Kingston University), Jessica Yee (Native Youth Sexual Health Network), Mark Yudin (St-Michaels Hospital).

Quebec: Dada Mamvula Bakombo (McGill University Health Centre), Jean-Guy Baril (Université de Montréal), Nora Butler Burke (University Concordia), Pierrette Clément (McGill University Health Center), Janice Dayle, (McGill University Health Centre), Danièle Dubuc, (McGill University Health Centre), Mylène Fernet (Université du Québec à Montréal), Danielle Groleau (McGill University), Aurélie Hot (COCQ-SIDA), Marina Klein (McGill University Health Centre), Carrie Martin (Native Womens Shelter of Montreal), Lyne Massie, (Université de Québec à Montréal), Brigitte Ménard, (McGill University Health Centre), Nadia O’Brien (McGill University Health Centre and Université de Montréal), Joanne Otis (Université du Québec à Montréal), Doris Peltier (Canadian Aboriginal AIDS Network), Alie Pierre, (McGill University Health Centre), Karène Proulx-Boucher (McGill University Health Centre), Danielle Rouleau (Centre Hospitalier de lUniversité de Montréal), Édénia Savoie (McGill University Health Centre), Cécile Tremblay (Centre Hospitalier de lUniversité de Montréal), Benoit Trottier (Clinique lActuel), Sylvie Trottier (Centre Hospitalier Universitaire de Québec), Christos Tsoukas (McGill University Health Centre).

Other Canadian provinces or international jurisdictions: Jacqueline Gahagan (Dalhousie University), Catherine Hankins (University of Amsterdam), Renee Masching (Canadian Aboriginal AIDS Network), Susanna Ogunnaike-Cooke (Public Health Agency of Canada).

All other CHIWOS Research Team Members who wish to remain anonymous.

Funding

CHIWOS has been made possible through funding from the Canadian Institutes of Health Research (MOP-111041), the CIHR Canadian HIV Trials Network (CTN 262), the Ontario HIV Treatment Network (OHTN), and the Academic Health Science Centres (AHSC) Alternative Funding Plans (AFP) Innovation Fund. Some authors are receiving salary support: Johanna Lewis from the Social Sciences and Humanities Research Council (SSHRC) and Alexandra de Pokomandy and Nadia O’Brien from the Fonds de Recherche Santé- Québec (FRSQ).

Availability of data and materials

Not applicable for this manuscript. Raw data is available by becoming a study team member, signing a data sharing and collaboration agreement, being added to the WCH’s REB and completing a CHIWOS Data Request Form available at our website (www.chiwos.ca).

Authors’ contributions

All authors have had substantive contributions to this manuscript’s content. The authors contributions were as follows: 1) conception and design (ML, SG, VLK, JL, AP, NO, AC, WT, VN, KB, DD, AK); 2) interpretation (ML, SG, VLK, JL, TC, AP, NO, AC, WT, VN, KB, DD, AK); 3) drafting the manuscript (ML, SG, VLK, JL, JT-P); 4) revising it critically for important intellectual content (AP, NO, AC, WT, VN, KB, DD, JG, KP-B, RSH, AK). All authors read and approved the final manuscript.

Competing interests

The authors declare that they have no competing interests.

Consent to publish

Not applicable.

Ethics approval and consent to participate

Primary ethics approval for CHIWOS was obtained from Women’s College Hospital (WCH) (ON), Simon Fraser University (BC), University of British Columbia/Providence Health, and McGill University Health Centre (QC) from their respective Research Ethics Boards (REBs). Study sites with independent REBs obtained their own approval prior to commencing enrolment. The completion of the PRA-administered web-based questionnaire with participants was completed only after consenting.

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Correspondence to Mona Loutfy.

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Loutfy, M., Greene, S., Kennedy, V.L. et al. Establishing the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS): Operationalizing Community-based Research in a Large National Quantitative Study. BMC Med Res Methodol 16, 101 (2016). https://doi.org/10.1186/s12874-016-0190-7

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Keywords

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