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Establishing the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study (CHIWOS): Operationalizing… Loutfy, Mona; Greene, Saara; Kennedy, V. L; Lewis, Johanna; Thomas-Pavanel, Jamie; Conway, Tracey; de Pokomandy, Alexandra; O’Brien, Nadia; Carter, Allison; Tharao, Wangari; Nicholson, Valerie; Beaver, Kerrigan; Dubuc, Danièle; Gahagan, Jacqueline; Proulx-Boucher, Karène; Hogg, Robert S; Kaida, Angela Aug 19, 2016

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CORRESPONDENCE Open AccessEstablishing the Canadian HIV Women’sSexual and Reproductive Health CohortStudy (CHIWOS): OperationalizingCommunity-based Research in a LargeNational Quantitative StudyMona Loutfy1,2*, Saara Greene3, V. Logan Kennedy1, Johanna Lewis1,4, Jamie Thomas-Pavanel1, Tracey Conway1,5,Alexandra de Pokomandy6,7, Nadia O’Brien6,7, Allison Carter8,9, Wangari Tharao10, Valerie Nicholson8,Kerrigan Beaver1, Danièle Dubuc7, Jacqueline Gahagan11, Karène Proulx-Boucher7, Robert S. Hogg8,9,Angela Kaida8 and on Behalf of the CHIWOS Research TeamAbstractBackground: Community-based research has gained increasing recognition in health research over the last twodecades. 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 researchliterature is predominantly composed of small projects, using qualitative methods, and set within geographicallylimited communities. Its use in larger health studies, including clinical trials and cohorts, is limited. We presentthe 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 theresearch process. Successes, challenges and further considerations are offered.Discussion: Through the integration of community-based research principles, we have been successful in: facilitatinga 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 anongoing iterative community-based research process. Our community-based research approach within CHIWOSdemanded that we be cognizant of challenges managing a large national team, inherent power imbalances andchallenges with communication, compensation and volunteering considerations, and extensive delays ininstitutional processes. It is important to consider the iterative nature of community-based research and to workthrough tensions that emerge given the diverse perspectives of numerous team members.(Continued on next page)* Correspondence: mona.loutfy@wchospital.ca1Women’s College Research Institute, Women’s College Hospital, Universityof Toronto, 76 Grenville St., Room 6415, Toronto, ON, Canada, M5S 1B22Department of Medicine and Institute of Health Policy, Management andEvaluation, University of Toronto, Toronto, Ontario, CanadaFull list of author information is available at the end of the article© 2016 Loutfy et al. Open Access This article is distributed under the terms of the Creative Commons Attribution 4.0International License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, andreproduction in any medium, provided you give appropriate credit to the original author(s) and the source, provide a link tothe Creative Commons license, and indicate if changes were made. The Creative Commons Public Domain Dedication waiver(http://creativecommons.org/publicdomain/zero/1.0/) applies to the data made available in this article, unless otherwise stated.Loutfy et al. BMC Medical Research Methodology  (2016) 16:101 DOI 10.1186/s12874-016-0190-7(Continued from previous page)Conclusions: Community-based research, as an approach to large-scale quantitative health research projects, isan 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 bebetter planned and result in success.Keywords: Women, HIV, CHIWOS, Community-based research, Cohort study, Research methodologyBackgroundAs an approach to research, community-based research(CBR) focuses on acknowledging the inequities that existbetween researchers, participants and community mem-bers [1, 2]. It ensures that the research question,method, design and the utilization of the data are guidedby the community [3–8]. In CBR, researchers and com-munity members engage in partnerships that equallyvalue lived experience and academic expertise in an at-tempt to minimize inequities [1]. Importantly, CBR at-tempts to ensure that results reflect the community’svision of change [1, 9, 10]. The relevance of CBR find-ings in health research today is established through thesepartnerships and the creation of research that is translat-able given the collaborative process [1, 11]. Despite thesebenefits, uptake has been stalled because of struggles todetermine how to include the iterative nature of CBRinto the rigorous process of health research [1, 2, 12].When used, CBR approaches are most commonlyadopted in relatively small studies, conducted in a lim-ited geographic area [2, 13–15]. The limited uptake isdespite the fact that CBR has been found to improve re-search recruitment, response rates and retention [16],particularly among minority groups [17, 18]; to improvecommunity investment in research; and to increase theuptake of the findings in the community [2, 19].If health research is meant to improve health out-comes of all individuals, the historical absence ofwomen from health research is potentially detrimentalto women’s health [2, 19–21]. CBR offers a critique oftraditional biomedical research approaches wherepatriarchy and sexism have prevailed and potentiatesan opportunity to address the knowledge gap relatedto women’s health [1]. As such, academics in the fieldof women’s health have started to engage in CBR andother forms of unconventional, participatory research[22–26].In the field of HIV, the systematic exclusion of womenfrom clinical studies has been particularly problematic[19]. Given the rapid medical advances in HIV, the ex-clusion of women has yielded significant issues in theirHIV care. Epidemiological HIV data of women remainsrelatively sparse despite the feminization of HIV; clinicalunderstandings of women regarding dosage and toxicityto antiretroviral therapies are limited due to suchtreatments being tested in trials with a predominance ofmale participants and women-focused research is almostnon-existent [19]. Due to the gendered realities of HIV,women living with HIV often possess unique care needsthat go overlooked [27]. Furthermore, when insuffi-ciently included, women’s unique considerations arerarely elicited [19]. These circumstances of unique needand community informant capacity in terms of study de-velopment potentiate an ideal situation for the use ofCBR [28]. The aim of this paper is to share our researchteam’s experience with the process of initiating, develop-ing, and implementing a large national longitudinal co-hort study involving women with HIV using a CBRapproach. It is our intention that we demonstrate toother quantitative health researchers that a CBR ap-proach is feasible and beneficial within large health re-search projects.Description of CHIWOSThe Canadian HIV Women’s Sexual and ReproductiveHealth Cohort Study (CHIWOS) is a national, multi-site, inter-disciplinary, CBR, quantitative, longitudinalcohort study that seeks to understand whether and howwomen-centred HIV care (WCHC) [28] may improvehealth outcomes for women living with HIV in Canada.Cohort data collection for CHIWOS was launched in2013 in British Columbia (BC), Ontario (ON), and Que-bec (QC), with electronic, peer research associate(PRA)-driven data collection. PRAs are women withHIV who are hired and trained to conduct research; inthis case: the recruitment, consenting and survey admin-istration. As of May 1, 2015 1425 women with HIV wereenrolled in CHIWOS and had completed the baselineinterview questionnaire. Two additional time points arescheduled at 18 and 36 months (a complete descriptionof CHIWOS can be found at www.chiwos.ca).CHIWOS is working towards a flexible, transformativeand action-oriented approach to women’s health re-search. CHIWOS’s goals are to address a gap in know-ledge related to women and HIV in Canada from theperspective of women. The specific aims of CHIWOSare to estimate: 1) the proportion and patterns of, as wellas the factors associated with, WCHC uptake, and 2) theeffect of WCHC on their overall (quality of life), HIVLoutfy et al. BMC Medical Research Methodology  (2016) 16:101 Page 2 of 9[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 experi-ence from various disciplines (Fig. 1). In addition to ourCBR approach, CHIWOS is guided by critical feministand social justice frameworks and considers social deter-minants of health and intersectionality perspectiveacross the lifespan [29–31].DiscussionOur team, including women with HIV, identified earlyon that in order to create meaningful knowledge on thehealth and care of women with HIV, a comprehensiveunderstanding of community experiences and needs wasessential and thus the vital need to use a CBR approachemerged. As our experience with CBR has evolved, wehave been tasked with reflecting on how the study teamhas operationalized CBR principles, our successes, andour challenges from both academic and communitylenses. Our joint perspective creates a comprehensivedialogue about the value of CBR, as we have formed ateam with significant diversity, from clinicians to epide-miologists, research assistants to PRAs.Conceptually, CHIWOS was born out of pursuingtopics based on community identified needs and the po-tential impact for improving care for women with HIV.The newly formed CHIWOS team began the project bybrainstorming and developing a study vision, mission,mandate and values (Table 1), all of which were led andinformed by community expertise. Table 2 presents ourtheoretical and research frameworks and guiding princi-ples, which include critical feminism, anti-oppression,intersectionality and social justice [29–31]. This wasfollowed by a two-year long formative phase, which in-cluded qualitative data collection with women fromacross the country to inform our understanding ofWCHC. The CHIWOS team then embarked on a year-long CBR survey development process described else-where [32]. Community members, including trainedPRAs and other women with HIV, were asked to pilotand revise the survey. After piloting the draft question-naire, PRAs and participants were asked to describetheir experience, and explain any concerns related to thesurvey. The crucial community feedback garnered fromthese discussions informed subsequent revisions, includ-ing: cutting sections that felt redundant, unjustifiably in-trusive, or excessively long; rephrasing questions tobetter reflect the needs, understandings, and identities ofwomen; and adjusting skip patterns to ensure the rele-vance of questions to particularly situated women. Theseinsights were essential to informing the development ofthe final survey and, ultimately, the involvement of awide inter-disciplinary team.A critical aspect of the CBR process was to work withand train PRAs, and importantly, to provide them withthe support necessary to ensure their ongoing involve-ment in the project. A team of 8-28 PRAs was hired andtrained in each province. A national team developed thecurriculum for the training based on principles of par-ticipatory adult learning and the insights of modules de-veloped for other studies. Provincial trainings wereorganized over several days to build relationshipsPrincipal InvestigatorsMona Loutfy, Alexandra de Pokomandy, Bob  Hogg, Angela KaidaQuebec            Core Research TeamOntario             Core Research TeamBritish Columbia Core Research TeamQuebec Community Advisory BoardOntario Community Advisory BoardBritish Columbia Community Advisory BoardNational Steering CommitteeNational Research TeamNational Core Research Team24 National Survey Development Working GroupsSampling, Recruitment and Data Management CommitteeKnowledge Transfer and Exchange (KTE) Working GroupCHIWOS Aboriginal Advisory Board: Prioritizing the Health Needs of Positive Aboriginal Women (CAAB-PAW)National Management TeamPeer Research Associate  Training Working GroupQuebec            PRA TeamOntario            PRA TeamBritish Columbia PRA TeamFig. 1 The CHIWOS Study Team Structure. A diagram illustrating the community-based research (CBR) team structure used by the CHIWOS StudyTeam. Developed during the formative phase of CHIWOS to ensure meaningful involvement of all stakeholders. The boxes identify the variousgroups and committees involved in the management of CHIWOS and the overarching structure of the Study TeamLoutfy et al. BMC Medical Research Methodology  (2016) 16:101 Page 3 of 9amongst the team members; review important concepts;discuss the CHIWOS project and its approach, researchprinciples, and team structure; provide practical trainingaround recruiting and obtaining consent from potentialparticipants, administering the online survey instrument,accessing the supports available to PRAs, and other rele-vant information. An anonymous evaluation was soli-cited from the PRAs to inform subsequent trainings andongoing learning opportunities. A secure online platformfor PRA training and networking was also created for re-fresher training and newly hired PRAs. We also createda process through which PRAs connect on a regularbasis with each other and provincial coordinators andinvestigators to provide input and receive updates, usu-ally through monthly teleconference. The supportprovided to each PRA needed to be tailored to theunique needs of the individual. Understanding the needsof each PRA occurred over time and policies were devel-oped and recorded in order to ensure that these strat-egies were upheld.PRAs experienced challenges due to the varying ex-pectations of what their new role would encompass.Consequently, the team had to be innovative in ensuringeach PRA felt that their contributions were manageableand meaningful depending on each PRAs capacities andinterests. In light of this, new opportunities were devel-oped for the PRAs to be involved in the project in a var-iety of leadership capacities. Some of these positionsinclude being National Management Team and Know-ledge Translation and Exchange Working Group PRATable 1 CHIWOS Vision, Mission, Mandate & Core ValuesCHIWOS Vision, Mission, Mandate & Core ValuesVision, Mission and Mandate Vision CHIWOS envisions a country where all women living with HIV are able to achieveoptimal health and well-being, no matter where they are in their experience of HIV andin their lives. CHIWOS aims to contribute to this vision through transformationalwomen-centred community-based research and action that is driven by HIV-positivewomen, researchers, care providers and policy makers, in all of their diversity, together,within an equitable and mutually respectful environment.Mission CHIWOS is committed to creating new knowledge that will be used to support womenliving with HIV in Canada to achieve optimal health and wellbeing through meaningfullyinvolving them in every stage of the research process by providing a safe, innovative, andtransformational research environment.Mandate To assess the barriers to and facilitators of women-centred HIV care use and the impactof such patterns of use on overall, HIV, mental, women’s, sexual and reproductive healthoutcomes of women living with HIV across Canada, through excellence in women-centred community-based research.Core Values Integrity CHIWOS believes that integrity should be at the core of everything we do. Integrity isthe quality of being honest and responsible. It is the willingness to act according to theethics, values, beliefs and principles that we hold as members of CHIWOS.Respect CHIWOS strives to promote feelings of esteem and interact in such a way as to promotethat esteem among all members. This means having a sense of the worth or excellence ofoneself and others, both as professionals and human beings. It also means behaving inways that would bring credit and honour upon oneself and the team to which one belongs.Accountability CHIWOS encourages its members to accept responsibility for their actions and work. Itis hoped that members of this project will see themselves accountable to each other aswell as to women living with HIV in Canada.Inclusivity CHIWOS acknowledges the multiple, complex, and overlapping identities that create arich and vibrant community with many different experiences of health and wellness. Allof these experiences will be shared and honoured.Equity CHIWOS understands that disparities in health result from systemic inequalities that areunjust and unfair, and will work to address these disparities holistically.Partnership andCollaborationCHIWOS is committed to working in partnership with community members, and otherstakeholders in HIV-positive women’s health, at all stages of our research. Diverse formsof knowledge are valued and inform our work. Collaboration deepens and strengthensour impact.Empowerment CHIWOS strives to create a forum for the celebration of existing capacities and skills,and to create an opportunity to build on the skills, abilities and the courage ofindividuals and communities to make informed choices, and to transform those choicesinto desired actions and outcomes.Social Action CHIWOS aims to be transformational. The research process and the knowledge producedwill act as vehicles for positive and sustainable social change that will promote health andwellness among women living with HIV.Loutfy et al. BMC Medical Research Methodology  (2016) 16:101 Page 4 of 9Table 2 Theoretical and Research Approaches & Guiding PrinciplesCHIWOS Theoretical & ResearchApproaches & Guiding PrinciplesCHIWOS definition Operationalization (completed/in progress/planned)Theoretical approaches Women-centredCommunity-basedResearch- Involves the community of interest, women living with HIV, at allstages of research: developing research questions, researchprocedures and questionnaire; carrying out research; data analysis,and result dissemination.- Appreciates the different expertise of community members andacademic researchers and has them both being equal partners aspart of the project.- Understands the involvement of all different types of women andwomen at different stages of their life.- Understands that women’s lives are busy and tries to accommodatetheir different needs with flexibility.- Women living with HIV are involved as part of the national SteeringCommittee, provincial Community Advisory Boards (CABs) and PeerResearch Associates (PRAs) in developing research questions and thequestionnaire, as well as all other aspects of the study, includingrecruitment, troubleshooting data quality and interview challenges,knowledge translation and exchange (KTE), etc.- PRAs are involved on various management committees and workinggroups; research decisions include input from the PRAs.- Women living with HIV at various stages of life have been hired as PRAs.- Flexible among all teams members, including working with PRAsschedules, holding PRA and team meetings in the afternoon forthose with children and in the evening for those with jobs.Critical FeministApproach- Analyzes the impact of structural inequalities, and gender-basedmarginalization and oppression.- Holds gender as socially situated, complex, and non-binary.- Understands the other diverse aspects of identity, power, and realitythat shape individuals and communities experiences; recognizes howsexism, racism, classism, ableism, homophobia, transphobia, HIV-related stigma, and other axes of oppression intersect.- Both CHIWOS’s process and its outcome goals are centred aroundprinciples of anti-oppression, an analysis of structures of power, and avision of being transformative and action-driven.- It is a community-based project which seeks to create a new researchcommunity of doctors, care providers, academics, students, activists,community members, and other stakeholders, driven by mutual respectand goals of social change.- All involved receive training with a “What is CHIWOS?” presentation(available at www.chiwos.ca) and discussion of critical feminist andanti-oppression approaches.- The team partakes in ongoing discussions of reflexivity regardingpower, anti-oppression amongst any other issue that is raised.Intersectionality - Analyzes the overlapping and intersecting nature of identities andoppressions that shape individual lives and experiences, and anacknowledgement of the mutually supportive and constitutivenature of hierarchies and structures of power along different axes.Also acknowledges and values how identities and communities canbe sites for resistance, resilience, and support.- CHIWOS is attentive towards the diverse social positioning of thecommunity of women. Recognizing the many intersecting identitiesthat women living with HIV inhabit, we have tried to develop aresearch instrument that reflects the needs of trans women,Aboriginal women, immigrant women, women of colour, queerwomen, and other communities/experiences such as those ofwomen with children, women involved in sex work, young women,etc. (recognizing that none of the groups are mutually exclusive). Wehave worked throughout the development process with stakeholdergroups able to focus on different community needs to work towardsa tool that is acceptable and respectful for the diversity of thewomen living with HIV community.Research approaches Anti-Oppression andAnti-Racism- Related principles of anti-oppression further emphasize that womenwithin and between societies are positioned differently and are dif-ferently impacted by the complexities of privilege and powerrelations.- Maintain an analysis of oppression (sexism, racism, etc.) as central toour research goals and instruments as we try to capture the impactof racism and other forms of oppression on women’s experiences,but also to our process – for example, integrating an anti-oppressionworkshop into PRA training.Social Determinantsof Health- Our project understands that social factors have key implications onhealth and that simply administering medical treatment is ofteninsufficient to improve health. Poverty, gender inequity, and amultitude of other factors have a major impact on women’svulnerability to health problems and (in)ability to access care andsupport.- We developed the survey instrument with a keen eye towardscapturing the many non-medical factors that impact women’s healthstatus and care. In the formative phase focus groups discussions, wewere sure to explicitly ask about structural barriers to care in order tocapture people’s experience with some of these social determinants ofhealth.Loutfyetal.BMCMedicalResearchMethodology (2016) 16:101 Page5of9Table 2 Theoretical and Research Approaches & Guiding Principles (Continued)Guiding principles Social Justice and HumanRights- The research holds to emancipatory goals of creating meaningfulchange in affected communities, and to challenge oppression,improve health, eliminate barriers, and further social justice.- We are engaged in action-driven research, setting out to assess theneed for change to existing care and service provision models, andinform that change to better meet the needs of women living withHIV. We recognize that health disparities and unjust barriers to acces-sing good health/care are deeply entrenched and tied into large struc-tures of oppression, but hope that the results of this work willcontribute in meaningful ways to improving care for women livingwith HIV.Meaningful Involvement ofWomen living with HIV/AIDS& Greater Involvement ofPersons living with HIV/AIDS- Women living with HIV must be recognized as equal partners in allstages of the project. All contributions and experiences are respectedand valued; women living with HIV are recognized as experts in theirown lives. These principles demand the intent to foster self-determination and agency in the community, and should be engagedin without tokenism.- We assembled CABs in each province to bring together diverseperspectives and experience from women living with HIV.- In order to ensure strong community voices, there is a PRA fromeach province on the National Management Team and SteeringCommittee, and PRAs lead other Working Groups.- We worked closely with PRAs throughout development andimplementation of the survey instrument through an extensive anditerative community-based consultative process, including womenliving with HIV and continue to do so in the new surveys.Ownership, Control,Access, and Possession(OCAP™)Definitions from First Nations Centre (2005):Ownership, control, access, and possession, or OCAP™, is self-determination applied to research. It is a political response totenacious colonial approaches to research and informationmanagement.Ownership: Ownership refers to the relationship of a First Nationscommunity to its cultural knowledge/data/information. The principlestates that a community or group owns information collectively in thesame way that an individual owns their personal information.Control: The aspirations and rights of First Nations Peoples to maintainand regain control of all aspects of their lives and institutions extendto research, information and data. The principle of control asserts thatFirst Nations Peoples, their communities and representative bodies arewithin their rights in seeking to control all aspects of research andinformation management processes which impact them. First Nationscontrol of research can include all stages of a particular researchproject – from conception to completion. The principle extends to thecontrol of resources and review processes, the formulation ofconceptual frameworks, data management and so on.Access: First Nations Peoples must have access to information and dataabout themselves and their communities, regardless of where it iscurrently held. The principle also refers to the right of First Nationscommunities and organizations to manage and make decisionsregarding access to their collective information. This may be achievedin practice through standardized, formal protocols.Possession: While ownership identifies the relationship between apeople and their data in principle, possession or stewardship is moreliteral. Although not a condition of ownership per se, possession (ofdata) is a mechanism by which ownership can be asserted andprotected. When data owned by one party is in the possession ofanother, there is a risk of breech or misuse. This is particularlyimportant when trust is lacking between the owner and possessor.- Recognizing the significant impact of HIV among First Nationscommunities in Canada, and the violent legacy and ongoingcolonialism, CHIWOS is committed to working towards OCAP™principles and building an ongoing relationship with First Nationscommunities.- The creation of the CHIWOS Aboriginal Advisory Board: Prioritizingthe Health Needs of Positive Aboriginal Women (CAAB-PAW) was acrucial step in working towards this in part, by reviewing andinforming CHIWOS’s work, and to ensure CHIWOS strives toaccomplish its goals for and with Aboriginal women.Loutfyetal.BMCMedicalResearchMethodology (2016) 16:101 Page6of9Representatives. We have also learned that meaningfulinvolvement and adequate support for PRAs must in-clude appropriate compensation, recognition and ac-knowledgement. For any voluntary commitment there isno pressure or expectation that PRAs attend. Thisprocess has been challenging because, ideally, PRAsshould be compensated for all of their work. The conse-quence of not being able to financially afford this idealpresents challenges to acknowledging all contributions.Through the unique role of being a PRA, manywomen continue to experience the challenge of “wearingmany hats”. On several occasions, PRAs have completedinterviews with friends, family members or clients. Fur-thermore, they may be perceived and treated differentlyby women in the community based on their new PRAposition within CHIWOS. These experiences also tieinto the challenge of setting appropriate boundaries withparticipants and navigating the thin line that exists be-tween these varying relationships due to the multipleroles of the PRA. CHIWOS has developed “ChallengingScenario Guidelines” to support PRAs experiencing chal-lenges brought to the forefront throughout the project.Despite these ups and downs, the CHIWOS PRAs arethe heart of this project. In partnership with various clinicaland community sites in each province, PRAs have led thenational cohort data collection phase. Word of mouth,recruiting from their personal and professional networksand utilizing peer-driven recruitment strategies have beenthe most successful strategies. The community connec-tions, experiences, and aptitudes of our PRAs have also en-abled successful recruitment from many under-served andharder-to-reach communities. Consequently, our cohort isinclusive of trans people, women who have experience withsex work, First Nations, Métis and Inuit women, womenwith a history of incarceration, African, Caribbean andBlack women, and women not accessing care.While our successes can feasibly be implemented by fu-ture research teams where CBR is well suited, the chal-lenges that we have encountered raise importantconsiderations for how to resolve, or at least attempt to re-solve, the tensions that ultimately emerge when taking aCBR approach to national research. A key tension that wecontinue to struggle with is the reality that our consultativeprocess requires more time. This is poorly understood andaccepted at a bureaucratic level. We have also experiencedissues with PRA compensation at a bureaucratic level.These two challenges capture the team’s overall experienceof navigating CBR within large academic settings that areunfamiliar with a CBR process. In consideration of plan-ning a large-scale CBR project, it would be advisable tomeet with leadership within your institution to ensure theyunderstand and will fully support the CBR process.Because CHIWOS was developed as a CBR projectwith a specific emphasis on equity and anti-oppressiveapproaches to research, power imbalances, such asdecision-making roles, also occurred providing the re-search team with the opportunity to reflect and find so-lutions aimed to maximize decision-making equitability.The most effective solution was expanding communica-tion. Establishing an understanding in the formativephase of each team member’s role, contributions, com-munication style, and skills was also particularly vital tothe sustainability and success of this large, national CBRguided project.Given the predominant quantitative expertise amongthe research team, there were also challenges in shiftingtoward a CBR approach that needed to be openly dis-cussed. This entailed, and will continue to entail, ongoingreflective discussions that work toward identifying possiblemethodological and ethical tensions that often emergewhen doing CBR that relies on multiple forms of know-ledge [33]. These tensions are not easily resolvable, butour reflective attention to them reinforces and supportsour accountability to enact the long list of critical feministprinciples and core values that guide us in our research.ConclusionsWe believe that our reflections on our process of usingCBR can generally be applicable to any health researchstudies; however, we acknowledge that the clinical and so-cial complexity of HIV may result in some unique realitiesof CBR. CHIWOS offers new expertise on how to reframehealth research approaches to women and HIV in keepingwith the belief that research has the potential to transformthe lives of communities through active engagement. Weadvocate that by academics, community members and par-ticipants sharing with and learning from each other, we canstrengthen and develop important frameworks, principlesand practices aimed at integrating the complex process ofCBR into medical research. As others have previouslystated, we also suggest that health research needs to beaction-oriented, and not just undertaken simply for the sakeof knowledge production [34]. Research can be re-conceptualized as a process, not just an outcome. CBR chal-lenges us to consider how this process itself can be an agentof change through partnerships and capacity building [16].AbbreviationsCHIWOS, Canadian HIV Women’s Sexual and Reproductive Health CohortStudy; ICWNA, International Community of Women living with HIV, NorthAmerica; HIV/AIDS, Human Immunodeficiency Virus/AcquiredImmunodeficiency 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, commu-nity advisory boards; GIPA/MIPA, greater and meaningful involvement ofpeople living with HIV; MIWA, meaningful involvement of women living withHIV; BC, British Columbia; QC, Quebec; KTE, knowledge translation and ex-change; CTN, Canadian HIV Trials Network; AHSC, Academic Health ScienceCentres; AFP, alternative funding plans; OCAP, ownership, control, access,and possession; CAAB-PAW, CHIWOS aboriginal advisory board-positive abo-riginal womenLoutfy et al. BMC Medical Research Methodology  (2016) 16:101 Page 7 of 9AcknowledgementsThe Canadian HIV Women’s Sexual and Reproductive Health Cohort Study(CHIWOS) Research Team would like to especially thank all of the women livingwith HIV who participate in the research and entrust CHIWOS with theirexperiences of HIV treatment, care, and support. We also thank the entirenational team of Co-Investigators, Collaborators, and Peer Research Associates.We would like to acknowledge the three provincial Community AdvisoryBoards, and the national CHIWOS Aboriginal and African Caribbean and BlackAdvisory Boards, and our partnering organizations for supporting the study.CHIWOS Research Team ListBritish Columbia: Aranka Anema (University of British Columbia), DeniseBecker (Positive Living Society of British Columbia), Lori Brotto (University ofBritish 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), NadaGataric (British Columbia Centre for Excellence in HIV/AIDS), Robert S. Hogg (BritishColumbia Centre for Excellence in HIV/AIDS and Simon Fraser University), TerryHoward (Positive Living Society of British Columbia), Shahab Jabbari (BritishColumbia Centre for Excellence), Evin Jones (Pacific AIDS Network), Mary Kestler (OakTree Clinic, BC Women’s Hospital and Health Centre), Andrea Langlois (Pacific AIDSNetwork), Viviane Lima (British Columbia Centre for Excellence in HIV/AIDS), ElisaLloyd-Smith (Providence Health Care), Melissa Medjuck (Positive Women’s Network),Cari Miller (Simon Fraser University), Deborah Money (Women’s Health ResearchInstitute), Valerie Nicholson (Simon Fraser University), Gina Ogilvie (British ColumbiaCentre for Disease Control), Sophie Patterson (Simon Fraser University), Neora Pick(Oak Tree Clinic, BC Women’s Hospital and Health Centre), Eric Roth (University ofVictoria), Kate Salters (Simon Fraser University), Margarite Sanchez (ViVA, PositiveLiving Society of British Columbia), Jacquie Sas (CIHR Canadian HIV Trials Network),Paul Sereda (British Columbia Centre for Excellence in HIV/AIDS), Marcie Summers(Positive Women’s 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 (Women’s College Research Institute), JonathanAngel (Ottawa Hospital Research Institute), Fatimatou Barry (Women’s CollegeResearch Institute), Greta Bauer (University of Western Ontario), Kerrigan Beaver(Women’s College Research Institute), Anita Benoit (Women’s College ResearchInstitute), Breklyn Bertozzi (Women’s College Research Institute), Sheila Borton(Women’s College Research Institute), Tammy Bourque (Women’s CollegeResearch Institute), Jason Brophy (Children’s Hospital of Eastern Ontario), AnnBurchell (Ontario HIV Treatment Network), Allison Carlson (Women’s CollegeResearch Institute), Lynne Cioppa (Women’s College Research Institute), JeffreyCohen (Windsor Regional Hospital), Tracey Conway (Women’s College ResearchInstitute), Curtis Cooper (Ottawa Hospital Research Institute), Jasmine Cotnam(Women’s College Research Institute), Janette Cousineau (Women’s CollegeResearch Institute), Marisol Desbiens (Women’s College Research Institute),Annette Fraleigh (Women’s College Research Institute), Brenda Gagnier(Women’s College Research Institute), Claudine Gasingirwa (Women’s CollegeResearch Institute), Saara Greene (McMaster University), Trevor Hart (RyersonUniversity), Shazia Islam (Women’s College Research Institute), Charu Kaushic(McMaster University), Logan Kennedy (Women’s College Research Institute),Desiree Kerr (Women’s College Research Institute), Maxime Kiboyogo (McGillUniversity Health Centre), Gladys Kwaramba (Women’s College ResearchInstitute), Lynne Leonard (University of Ottawa), Johanna Lewis (Women’s CollegeResearch Institute), Carmen Logie (University of Toronto), Shari Margolese(Women’s College Research Institute), Marvelous Muchenje (Women’s Health inWomen’s Hands), Mary (Muthoni) Ndung’u (Women’s College Research Institute),Kelly O’Brien (University of Toronto), Charlene Ouellette (Women’s CollegeResearch Institute), Jeff Powis (Toronto East General Hospital), Corinna Quan(Windsor Regional Hospital), Janet Raboud (Ontario HIV Treatment Network), AnitaRachlis (Sunnybrook Health Science Centre), Edward Ralph (St. Joseph’s HealthCare), Sean Rourke (Ontario HIV Treatment Network), Sergio Rueda (Ontario HIVTreatment Network), Roger Sandre (Haven Clinic), Fiona Smaill (McMasterUniversity), Stephanie Smith (Women’s College Research Institute), Tsitsi Tigere(Women’s College Research Institute), Wangari Tharao (Women’s Health inWomen’s Hands), Sharon Walmsley (Toronto General Research Institute), WendyWobeser (Kingston University), Jessica Yee (Native Youth Sexual Health Network),Mark Yudin (St-Michael’s Hospital).Quebec: Dada Mamvula Bakombo (McGill University Health Centre), Jean-GuyBaril (Université de Montréal), Nora Butler Burke (University Concordia), PierretteClément (McGill University Health Center), Janice Dayle, (McGill University HealthCentre), 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 Women’s Shelter of Montreal), Lyne Massie, (Universitéde 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 (CanadianAboriginal AIDS Network), Alie Pierre, (McGill University Health Centre),Karène Proulx-Boucher (McGill University Health Centre), Danielle Rouleau(Centre Hospitalier de l’Université de Montréal), Édénia Savoie (McGillUniversity Health Centre), Cécile Tremblay (Centre Hospitalier de l’Universitéde Montréal), Benoit Trottier (Clinique l’Actuel), Sylvie Trottier (Centre Hospita-lier Universitaire de Québec), Christos Tsoukas (McGill University HealthCentre).Other Canadian provinces or international jurisdictions: JacquelineGahagan (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.FundingCHIWOS has been made possible through funding from the CanadianInstitutes of Health Research (MOP-111041), the CIHR Canadian HIV TrialsNetwork (CTN 262), the Ontario HIV Treatment Network (OHTN), and theAcademic Health Science Centres (AHSC) Alternative Funding Plans (AFP)Innovation Fund. Some authors are receiving salary support: Johanna Lewisfrom the Social Sciences and Humanities Research Council (SSHRC) andAlexandra de Pokomandy and Nadia O’Brien from the Fonds de RechercheSanté- Québec (FRSQ).Availability of data and materialsNot applicable for this manuscript. Raw data is available by becoming astudy team member, signing a data sharing and collaboration agreement,being added to the WCH’s REB and completing a CHIWOS Data RequestForm available at our website (www.chiwos.ca).Authors’ contributionsAll 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 finalmanuscript.Competing interestsThe authors declare that they have no competing interests.Consent to publishNot applicable.Ethics approval and consent to participatePrimary ethics approval for CHIWOS was obtained from Women’s CollegeHospital (WCH) (ON), Simon Fraser University (BC), University of BritishColumbia/Providence Health, and McGill University Health Centre (QC) fromtheir respective Research Ethics Boards (REBs). Study sites with independentREBs obtained their own approval prior to commencing enrolment. Thecompletion of the PRA-administered web-based questionnaire with partici-pants was completed only after consenting.Author details1Women’s College Research Institute, Women’s College Hospital, Universityof Toronto, 76 Grenville St., Room 6415, Toronto, ON, Canada, M5S 1B2.2Department of Medicine and Institute of Health Policy, Management andEvaluation, University of Toronto, Toronto, Ontario, Canada. 3School of SocialWork, McMaster University, Hamilton, Ontario, Canada. 4InterdisciplinaryStudies Program, York University, Toronto, Ontario, Canada. 5InternationalCommunity of Women living with HIV, North America (ICWNA) NewBrunswick, New Jersey, USA. 6Department of Family Medicine, McGillUniversity, Montreal, Quebec, Canada. 7Chronic Viral Illness Service, McGillUniversity Health Centre, Montreal, Quebec, Canada. 8Faculty of HealthLoutfy et al. BMC Medical Research Methodology  (2016) 16:101 Page 8 of 9Sciences, Simon Fraser University, Burnaby, British Columbia, Canada. 9BritishColumbia Centre for Excellence in HIV/AIDS, Vancouver, British Columbia,Canada. 10Women’s Health in Women’s Hands Community Health Centre,Toronto, Ontario, Canada. 11Health Promotion Division, Dalhousie UniversityHalifax, Nova Scotia, Canada.Received: 30 May 2015 Accepted: 19 July 2016References1. Israel BA, Schulz AJ, Parker EA, Becker AB. Review of community-basedresearch: assessing partnership approaches to improve public health. AnnuRev Public Health. 1998;19:173–202.2. De las Nueces D, Hacker K, DiGirolamo A, Hicks LS. A systematic review ofcommunity-based participatory research to enhance clinical trials in racial andethnic minority groups. Health Serv Res. 2012. doi:10.1111/j.1475-6773.2012.01386.x.3. Bourassa M, Bélair L, Chevalier JM, editors. Les outils de la rechercheparticipative. Éducation et Francophonie. 2007. p. XXXV.4. 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