Learning from our patients: Utilizing the expertise of transgender and/or gender diverse educators to build an inclusive learning cycle.

Transgender and/or gender diverse (TGD) patients face significant disparities in healthcare, exacerbated by a lack of practitioner knowledge about transgender healthcare needs (Grant et al., 2011; James et al., 2016). Historically, within the genetic counseling profession, there have been limited educational opportunities for genetic counselors (GCs) to learn about gender-affirming care. Several studies have shown GCs feel underprepared to work with TGD patients and desire more TGD-specific training (Berro et al., 2019; Ruderman et al., 2021; Zayhowski et al., 2019). Keeping this gap in mind, we created a community-based learning cycle in partnership with a TGD advisory board (TGDAB), with the goal of increasing GC knowledge and self-efficacy (Caldwell et al., 2018; Keller et al., 2019) (Figure 1). We provide data on the workshop component of the community-based learning cycle and refer readers to Huser et al. (2022) and Ernst (2022) for details on the online educational modules that were developed for both iterations of the learning cycle. The TGDAB represented a sample of TGD individuals, described as TGD educators throughout this work, with diverse lived experiences. The involved TGD educators spoke from their own individual experiences and did not represent the perspectives of all individuals who are gender diverse. Table S1 highlights the diversity of TGD educators involved in both iterations of the learning cycle. Those who participated in this project did so willingly with an interest in educating GCs and were financially compensated for their time. Partnership between the researchers and the TGD educators was modeled after community-based participatory research (CBPR) methodology with both parties sharing expertise and decision-making throughout the research process (Israel et al., 2005). The intention of this project was to amplify TGD voices, and this could not be done without community involvement (Charlton, 1998). The first iteration of this cycle, Amplify, launched in 2020 (Huser et al., 2022). TGDAB members were recruited locally and nationally through a variety of social media platforms and TGD-focused advocacy organizations. Of the 111 TGD individuals who responded to the initial interest form, four participated in the TGDAB for Amplify (Table S1). Content for the educational component of Amplify (online modules) explored core aspects of gender-affirming care applicable to cancer genetic counseling practice (Huser et al., 2022). Content was developed based on a comprehensive literature review and evaluated by TGDAB members. Additionally, several TGDAB members provided personal video testimonials about their own lived experiences. Forty GC learners completed this educational program (39 GCs and 1 GC student), and both knowledge and genetic counseling self-efficacy (GCSE) improved with an average 16.9% increase in knowledge score and 13.8% increase in GCSE, both reaching statistical significance (p < 0.0038) (Huser et al., 2022). GC participants also cited the inclusion of TGD perspectives in the online modules as highly valuable. To provide an opportunity to maximize the impact of this knowledge, we developed an interactive workshop where GCs could apply learned skills and receive feedback from paid TGD participants (i.e., TGD educators). Evidence has shown the value of clinical skill application opportunities in gender-affirming care education, specifically citing interactions with transgender individuals as an effective tool in improving educational outcomes for learners (Dowshen et al., 2013; Dubin et al., 2018; Greene et al., 2017). The entire learning cycle (online modules and interactive workshop) was launched a second time (Amplify Sprouted), one year later, in 2021, with a focus on gender-affirming care in the prenatal/preconception specialty. Educational content incorporated newer, relevant literature and additional insights from TGD individuals' healthcare experiences. Additional TGD educators were recruited through a similar process for Amplify Sprouted. Of the 30 TGD individuals who responded to the interest form, five participated in the TGDAB. Forty-five GC learners completed the Amplify Sprouted educational modules (26 certified GCs and 19 GC students) and both knowledge and GCSE improved with an average 16.0% increase in knowledge score and 11.6% increase in GCSE, both reaching statistical significance (p < 0.0038) (Ernst, 2022). These improvements were similar to those observed in the first iteration of the cycle. In addition to the educational modules, Amplify Sprouted included an interactive workshop. The remainder of this article will focus on the development and outcomes of the workshop component of both Amplify and Amplify Sprouted. The primary goal of the workshops was to help GCs solidify their new clinical knowledge on gender-affirming care with the support of TGD educators. A variety of learning opportunities within the workshops were provided to strengthen the learners' clinical skills. In anticipation of this part of the community-based learning cycle, TGD educators participated in a two-hour dedicated preparation meeting focused on role-play development and workshop execution. This was hosted by the GCs who initially recruited the TGD educators and designed both the educational modules and workshop (GC facilitators). This meeting helped TGD educators build common knowledge around the field of genetic counseling and empowered them to take on the educator role during the workshop. TGD educators chose to be involved in the workshop and were compensated for their time and effort. GC facilitators were present during the entire preparation meeting and workshop to organize the learning opportunities and moderate discussions. The first 4-hour workshop was held approximately 4 months after the Amplify educational modules were completed by GC learners and was conducted via Zoom. It was important to the TGD educators that GC learners participating in the workshop had completed the Amplify learning modules prior and had a personal desire to participate. Ten GC learners who had completed the Amplify learning modules expressed an interest in participating in the workshop. In order to promote one-on-one interactions, we worked to match each GC learner with a single TGD educator. These GC learners were financially compensated for their additional time and effort. It was acknowledged that continuing education units would have been ideal, however, the value of this educational event first needed to be demonstrated. Ten TGD educators, many of whom were already involved in the TGDAB, were recontacted and recruited for the workshop through the previous interest form. TGD educators were diverse in gender, sexual orientation, race, disability status, geographical location, and age (Table S1). The workshop consisted of two sets of small group role-plays and small group discussions (2–4 individuals per group) focused on providing care to a TGD patient with a family history of cancer. The role-plays were followed by a larger group discussion that allowed participants to share their perspectives on the learning experience of working through the role-plays. Four GC facilitators, who were involved in the design and implementation of Amplify, were present at the time of the workshop to assist in the workshop timeline and discussion moderation. GC facilitators were not in the breakout rooms for the individual paired role-plays. During the role-plays, GC learners were asked to obtain gender-affirming medical and family histories with the TGD educators acting in the patient role or observing the encounter (35 minutes per history). At the conclusion of each role-play, TGD educators provided real-time feedback on the counseling. The TGD educators who participated in the role-plays opted to utilize their real-world gender identities to best speak within the bounds of their expertise. With the knowledge that medical settings can be triggering for TGD people in and of themselves, and with the added dimension of potential gender dysphoria, the GC facilitators clarified that there could easily be a mixture of true and fictitious elements in the role-plays for the comfort of the TGD educators. During the role-play breakout discussion, GC learners had the opportunity to ask TGD educators about their clinical language and gender-affirming practice, including, but not limited to counseling techniques, intake information, clinical environment, and pedigree nomenclature. TGD educators provided feedback to GC learners with set prompts for discussion exploring what went well, what was challenging, and what could be improved. This dialogue allowed GC learners to reflect on the experience and lessons learned. A key component of the workshop was the opportunities for reflection (40% of the 4 hours). In addition to the discussions between GC learners and TGD educators (both postrole-plays and in one large group), a focus group was held after the large group discussion in which the TGD educators reflected on the workshop experience and its utility in educating GCs. One month following the workshop, a recap meeting was held with the TGDAB and GC facilitators to discuss the main takeaways from both educational interventions (didactic learning modules and interactive workshop) as well as the outcomes of their time involved with the TGDAB. Table 1 showcases key quotes from TGD educators, displaying the value of the workshop and community-based learning cycle (Figure 1). Given the positive feedback on the learning cycle from GC learners (gathered in a post-workshop survey) and TGD educators (gathered in the focus group), along with a known gap in gender-affirming education in the prenatal/preconception specialty (Ruderman et al., 2021), the cycle was replicated in 2021 (Amplify Sprouted). As previously discussed, adaptations were made to improve and refocus the experience in both the online modules and workshop. The second workshop included eight TGD educators (see Table S1 for demographic details), three of whom were recruited through the Amplify Sprouted TGDAB and five of whom were from the initial Amplify recruitment. Nine GC learners agreed to participate. A noteworthy adaptation was the addition of a dedicated GC learner focus group to reflect on the experience. Consequently, the Amplify Sprouted workshop included separate focus groups for both participating GC learners and TGD educators, in addition to small and large group discussions with both GC learners and TGD educators. Three GC facilitators were present at the time of this workshop to assist in maintaining the workshop timeline and large group discussion moderation. Once again, GC facilitators were not in the breakout rooms for the individual paired role-plays. A more detailed breakdown of the Amplify and Amplify Sprouted workshop timelines can be found in Table S2. Following the two iterations of the developed cycle, GC learners highlighted many lessons learned regarding the utility of community partnership in educational development and execution (Table 1). They identified the learning environment of the workshops as one of the most valuable components of the educational experience, noting that it allowed for two-way communication between the TGD educators and GC learners in a safe environment. GC learner quotes demonstrate the importance of a trusting relationship with the TGD educators, grounded in mutual understanding and respect for each other, acknowledging that all individuals chose to participate in this learning experience (Table 1). GCs are lifelong learners, and this novel approach is a way for GCs to stay up-to-date in the evolving ways to provide gender-affirming care. The experience of serving as a TGD educator created a positive learning experience for these individuals. Three of the ten TGD educators who participated in the Amplify workshop chose to participate again in the Amplify Sprouted workshop. This continued participation promoted relationship-building and community engagement between the TGD educators, GC learners, and GC facilitators. While the focus of the workshops was to educate GCs on gender-affirming care, multiple TGD educators commented they learned about clinical genetics and genetic counseling through this experience. The discussions between GC learners and TGD educators varied in each iteration of the workshop and the focus shifted from specific topics around gender-inclusive language in the Amplify workshop towards big-picture advocacy and the need for the creation of trans-affirming spaces within the GC community in the Amplify Sprouted workshop. Some TGD educators also specifically noted they made friends with other TGD educators during the workshop and have been given additional opportunities to consult on gender-affirming care. Our results suggest that in order to continue to use this learning cycle to positively impact GC clinical practice, it is critical to maintain close relationships with TGD educators. Both GC learners and TGD educators acknowledged that being involved in these interactive workshops could have a broader impact on their respective healthcare systems. Following the workshop, GC learners indicated they were inspired to share the acquired knowledge with their colleagues and larger clinical teams. TGD educators reported valuing the opportunity to potentially influence gender-affirming practices in a healthcare practitioner's future clinical care and the effect it could have on the broader experience TGD people have with healthcare practitioners. TGD individuals often have to educate their healthcare practitioners, and this workshop provided them with an avenue to share their lived experiences in a space where the healthcare practitioners were expecting feedback, thus lowering the pressure and fear of pushback from the GCs (Grant et al., 2011). Our work demonstrates that a community-based learning cycle can provide an important mechanism for enhancing GC competence and confidence in providing gender-affirming care (Figure 1). Along with our GC learners and TGD educators, there was a role for the GC facilitators in this cycle who drove the community-based learning. Facilitators establish relationships with individuals in a community to begin developing educational opportunities. Growing and maintaining this relationship is foundational in continuing the cycle. The relationship should be grounded in trust between individuals of a community and facilitators. Both GCs and TGD educators will continue to learn from each other, propelling the cycle forward for GC learners and increasing their knowledge and self-efficacy around gender-affirming care. This community-based learning cycle may be applicable to other communities experiencing healthcare disparities overlapping with those faced by TGD individuals. The workshop component of the cycle aims to foster a safe learning environment for both groups of participants, but it may not be the most effective educational approach for working with other marginalized communities and/or individuals. The intersectionality of race and gender as well as other intersecting identities (such as sexual orientation, disability status, etc.) should be taken into consideration given individuals may bring many of their identities to the forefront when involved in an educational experience (Crenshaw, 1989). Ideally, the chosen educational approach should be tailored to the unique needs of those with whom one is working with and learning from. It should strive to include core tenets of the presented workshop, including respect, honesty, and a willingness to learn between GCs and the participating educators. The chosen educational approach must also aim to not perpetuate an unethical educational burden that educators from marginalized communities may have experienced in past encounters with healthcare practitioners (Treharne et al., 2021). The main focus of the presented approach was to provide an educational opportunity to practicing GCs that may not have been provided earlier in training, by amplifying the voices and experiences of TGD individuals. As a result, GC learners were able to interact and collaborate with TGD individuals, an experience that may have been limited for them in the past. This approach could also be integrated into GC training programs in order to bring this education to a GC earlier in their career, given there is a broader lack of attention to the needs of historically marginalized individuals in healthcare graduate training programs, which will hopefully continue to improve over time. The needs of those holding marginalized identities will continue to evolve, as will affirming language and practices. This reiterates the need for ongoing learning through updated literature reviews and continued engagement with communities in a respectful manner. The community-based learning cycle highlights a way of initiating, building, and sustaining relationships with community members and an opportunity to maintain those relationships for continuous learning and advocacy. In this presented model, integrating TGD educators into GC education via community-based learning allowed both parties to learn from each other in a safe environment and build positive relationships that support patients' needs in genetic counseling clinical care. Gabrielle Ernst, Nicole Huser, Bailey Hulswit, Diane R. Koeller, and Beverly M. Yashar designed the study. Gabrielle Ernst and Nicole Huser executed participant recruitment and data collection. Gabrielle Ernst, Nicole Huser, Bailey Hulswit, Diane R. Koeller, and Beverly M. Yashar analyzed the data. Holden Bender-Bernstein, Steve Muir, and Emerson Brogdon-Soster provided expert perspective and feedback on the study and manuscript as individuals who are transgender and gender diverse. Gabrielle Ernst and Nicole Huser wrote the manuscript with critical feedback from all authors. Beverly M. Yashar supervised the overall project. Authors Gabrielle Ernst, Nicole Huser, Bailey Hulswit, Diane R. Koeller, and Beverly M. Yashar confirm that they had full access to all the data in the study and take responsibility for the integrity of the data and the accuracy of the data analysis. All the authors gave final approval of this version to be published and agreed to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved. This work has been supported by the Jane Engelberg Memorial Fellowship Student Research Award, provided by the Engelberg Foundation to the National Society of Genetic Counselors, Inc. Funding for this project was also provided by the Cancer Special Interest Group of the National Society of Genetic Counselors, Research Special Interest Group of the National Society of Genetic Counselors, Prenatal Special Interest Group of the National Society of Genetic Counselors, and the Michigan Association of Genetic Counselors. This project was also funded by the Rackham Graduate Student Research Grant through the University of Michigan. The Transgender and/or Gender Diverse Advisory Board provided invaluable perspective and expertise throughout all phases of the project. Specifically, we would like to acknowledge Alyssa W., Andréa Garcia, Bella Narvaez, C.P.D, D. Phillips, Ele Simon, Jamison Rigby, J. McGinn, and all other individuals involved in this work as TGD educators. Holden Bender-Bernstein, Steve Muir, and Emerson Brogdon-Soster served as TGD Educators for both learning cycles and contributed as co-authors on this publication. Finally, we would like to acknowledge and thank Lauren Mohnach for her expertise as a prenatal genetic counselor and guidance throughout this project. This was a project completed to fulfill the graduation requirements of a Master of Science in Genetic Counseling. All authors declares no conflict of interest. Human studies and informed consent: This study was reviewed and granted an exemption by the University of Michigan Institutional Review Board. All procedures followed were in accordance with the ethical standards of the responsible committee on human experimentation (institutional and national) and with the Helsinki Declaration of 1975, as revised in 2000. Informed consent was obtained from individuals who participated in this study. Animal studies: No non-human animal studies were carried out by the authors for this article. The data that support the findings of this study are available from the corresponding author upon reasonable request. Table S1. Table S2. Please note: The publisher is not responsible for the content or functionality of any supporting information supplied by the authors. Any queries (other than missing content) should be directed to the corresponding author for the article.