Key points are not available for this paper at this time.
Cisnormativity, the assumption that sex and gender are concordant, binary, and consistent over one's life,1 shapes our knowledge systems and adversely affects the validity and reliability of many sexed and gendered analyses. In a compelling commentary, Bauer1 demonstrated how cisnormativity has contributed to errors and gaps in medical, epidemiological, and pharmacological science and beyond. In one example, Bauer highlighted how using sex/gender as a proxy for uterine status led to significant misestimates of diseases, associated screening, and mortality. While cisnormative presumptions have large impacts on cisgender (cis), transgender (trans), and gender diverse (TGD) people * alike, the 'pink versus blue'1 approach to medicine and research has disproportionately impacted TGD people by ignoring their existence, and resultantly overlooking their multidimensional circumstances and needs. Within society's cisnormative landscape, TGD people are put at disproportionate risk of, and experience high rates of violence, harassment, discrimination, and a lack of access to basic needs (such as food security) and social and medical services.2-4 This context contributes to the disproportionate health disparities TGD people experience. As evidence-based models of practice are increasingly adopted, quality research regarding TGD people becomes increasingly important to inform responses to mitigate inequities in this area. Yet researchers routinely exclude TGD people, include TGD in problematic ways (e.g., trans women grouped with cis men who have sex with men), or draw conclusions underpinned by cisnormativity that pathologizes and stigmatizes communities. There is a critical need for research to meaningfully engage TGD people to improve health, care, research and outcomes. Importantly, there has been recent acknowledgement of the need to prioritize, engage and affirm TGD people in research and medicine. Researchers have begun exploring the barriers and facilitators of TGD peoples' participation in research. Reported barriers often result from stigma and discrimination TGD people regularly experience, including in the medical system.4-7 Relatedly, TGD people report distrust in research led by cis people4, 5 and/or research that is deficit-focused and, by extension, misleading and incomplete. TGD people also report being unaware of studies or their eligibility,4 and that study participation can be challenging given life circumstances (e.g., working multiple jobs, irregular access to a phone or internet).6 TGD people desire research that meaningfully engages TGD people (as participants, consultants, staff, advisory board members, and/or investigators); increases their knowledge of resources, research, or community; is shared with the community; and leads to action.4-7 TGD-inclusive spaces, including well-trained staff, are seen as minimal requirements.7 Researchers are also advised to address the social/structural factors that can limit TGD peoples' participation by covering transportation and meals, providing honoraria, and integrating visits into medical appointments or community gatherings.6 Addressing these barriers and fostering meaningful engagement of TGD people in research could be facilitated through adopting community-based research (CBR) approaches.8 In HIV research, research done in partnership with community (CBR) has been highly generative in knowledge production and in creating change. CBR has been critical to producing knowledge grounded in peoples' needs, experiences, and realities, and is therefore equally important to having a team of academics.9 CBR approaches—while coming with unique challenges—yield promising results and align with recently published best practices for research with TGD people that identify principles of community engagement, partnership, and capacity building; accountability to community; and community dissemination of findings as critical.10 Through our experiences incorporating CBR within the Trans Women HIV Research Initiative (TWIRI), we have come to understand that it is essential to include TGD people –particularly trans women—as partners in envisioning, leading, and carrying out any research that will involve or affect them. Briefly, TWIRI was co-founded by Ms. Yasmeen Persad, a trans woman activist and changemaker, and Dr. Mona Loutfy, an infectious diseases specialist and clinician scientist who specializes in HIV research. Yasmeen approached Mona in 2007 to ensure trans women would be meaningfully considered in Mona's early HIV studies. Yasmeen's leadership led to an overwhelming number of trans women participants in the first study she co-led. Mona, Yasmeen, and an interdisciplinary research team then collaborated for a decade before officially launching TWIRI. Community-based research is core to TWIRI. All studies have been conceptualized following the guidance of Yasmeen and other community members who work in partnership with the team's researchers and broader TGD community. Community partners have equal power on the team and are enabled and encouraged to enact this power. Practically, this means some proposed projects have been vetoed by community. One example occurred when an external team proposed an anal Papanicolaou testing study. Community contributors felt the requirements were invasive, and they were concerned the study may contribute to the stigmatizing belief that trans women engage in 'riskier' or 'dirtier' sexual activities. TWIRI did not pursue the collaboration. Scientific inquiries may lead to important data and possible clinical advancements, but community concerns need to be prioritized and sufficiently resolved prior to launch. Conversely, our community partnerships have been central to developing new research ideas. For example, community members brought forward questions that sparked our team's drug–drug interaction study (DDI; results forthcoming). As gender-affirming medical care (which can include feminizing hormones) is essential for many trans women's wellbeing, the lack of research on potential DDIs between feminizing hormones and combination antiretroviral therapy can contribute to lower engagement in HIV-related care and/or access to feminizing hormone therapies for trans women living with HIV. In conceptualizing the DDI study, it became apparent the intensive research visits required additional measures (beyond honoraria and meals) to support participant engagement. We hired and trained (in research practices, ethics, and more) three trans women as community research assistants (CRAs). CRAs joined participants for study visits and procedures, facilitated meals and rest between hourly blood samples, went for walks with participants, and ensured participant comfort. Participants were also able to bring their own support person who received their own stipend. These measures yielded retention and comfort, with one young participant sharing how valuable it was to meet community members during the study. TWIRI also engages a community advisory board (CAB) for all research. The CAB's purpose is to seek consultation from trans women and individuals who work with and for trans women. As CAB members have multiple competing priorities, we invite them to engage in flexible ways to accommodate schedules and interests. CAB members provide input regarding TWIRI's studies; ensure appropriate study language and framing; and inform study design, documents, roll-out, dissemination, and more. Recently, the CAB contributed to our Trans Women-centred HIV Care Model study (in press), by piloting the study documents and revising the interview guide (adding in more strengths-focused questions) and recruitment flyers to ensure potential participants could see themselves in the wording. Similarly, the CAB reviewed and revised our Feminizing Hormone Satisfaction Questionnaire (FEM-SQ) documents. Upon roll-out, several FEM-SQ participants specifically asked if members of the research team were TGD as they worried about the interpretation of the findings; describing our community partnerships resolved their concerns and resulted in study completion. To foster community partnerships, power dynamics need to be reflected on, mitigated, and addressed. Community-based research requires community members to take on leadership positions not just in title, but in active roles. To enable this type of relationship, research training and capacity-building has been critical alongside facilitating community members' comfort in contributing to the research process. This is done in a multitude of ways. Academic team members meet with community partners one-on-one to converse, explain research jargon, and ask for feedback. We also work toward building an inclusive and comfortable team by listening to community partners and mandating training for everyone (i.e., Trans 101 training, and selected workshops and readings). Training is required but on its own insufficient. Trans stigma and discrimination has occurred in some spaces, such as conferences. When this occurs, team members need to be ready to demonstrate support and allyship, to stand with their community partners, and to debrief as one form of collective care. Team members also regularly participate in Trans Pride parades; advocate for health and policy changes to support TGD people; and offer feedback and consultations to other teams to promote more inclusive dialogues. Through these actions, team members actively contribute to allyship, advocacy, and building affirming spaces. Lastly, disseminating accessible and relevant findings to trans women is also prioritized, as it enables translating research to action. For our community co-lead, reaching clinicians was a priority: she (co-)presented study findings at conferences to increase visibility and uptake among academic and clinical communities. Yasmeen also envisioned and co-led the interdisciplinary TWIRI Conferences, which have brought together approximately 300 community members, health and social care providers, researchers, and more. For all TWIRI analyses, we also create and widely disseminate a visual research snapshot capturing the study's key issues, results, and recommendations in lay language. If we, as researchers and clinicians, want to successfully resolve real-world problems, we need to fully consider the real world. The health and wellbeing of TGD people has been negatively impacted by social and structural systems that are stigmatizing and exclusionary, and research (or lack thereof) reproduces this structural-level stigma. Researchers intending to complete studies that include or affect TGD communities need to be aware of the historical forces shaping our knowledge systems, mitigate the potential harms they could inflict on communities, and work with communities to build trust, and design, carry out, and disseminate research that matters to the community. Building community partnerships that prioritize the experiences, knowledge, and needs of TGD communities can positively transform research, health, and care. A. Underhill, M. Loutfy, Y. Persad and A. Lacombe-Duncan conceived of the presented idea. A. Underhill wrote the manuscript with support from M. Loutfy, Y. Persad, A. Lacombe-Duncan, I. Armstrong, H. Kia, C. H. Logie, W. Tharao and R. Halpenny. All authors significantly contributed to CBR components of at least some of the studies discussed in this paper and have provided original ideas and reflections regarding CBR that informed this paper. We would like to acknowledge and thank the community partners, leaders, and participants, as well as the Community and Academic Advisory Board members that have guided our work and trusted our team. We look forward to completing many more meaningful projects together. We would also like to thank our funder, the Canadian Institutes of Health Research (FND grant number #FDN154325), as well as Gilead Sciences Inc. who sponsored our TWIRI conferences. The authors have no conflicts of interest to disclose. Not applicable.
Underhill et al. (Tue,) studied this question.