Learn more from the Principal Investigator about the motivations and background of this study.
Where did the idea for the study come from?
The study idea for Somatomap gender dysphoria (Somatomap GD) came from collaborations with transgender and nonbinary individuals in the community and from our previous research. Inspiration and motivation also came from my clinical experiences as a psychiatrist, as over the years I have treated transgender and nonbinary individuals who have sought help for anxiety, depression, and OCD. Some of these individuals were also seeking and receiving gender-affirming treatments at the time and told me their stories of challenges they had in communicating about the specific ways that their bodies were not congruent with their gender identity. Hearing these frustrations, I thought that visually-based tools might help with this communication.
The goal of the project is to create a visual tool to help transgender and nonbinary individuals with gender dysphoria communicate their experiences related to their bodies, which could eventually be used to enhance gender-affirming clinical treatment settings. In addition to the feedback from some of my patients, the major idea for Somatomap GD came from several individuals in our previous research study who had told us that a three-dimensional image might better be able to represent their gender-identified bodies than two-dimensional figures.
The project has developed over the years with continued and iterative feedback about how Somatomap can best represent individuals’ experiences. Research is a long process with many hurdles, but the people who have touched my life in my clinical work, in my personal life, and through others’ stories, are what drives me every day to see it through.
What has community engagement looked like for this project? How has it shaped the study?
This project has been a collaboration with transgender and nonbinary individuals from its inception. In addition to the feedback from some of my patients, the major idea for Somatomap GD came from several individuals in our previous research study who had told us that a three-dimensional image might better be able to represent their gender-identified bodies than two-dimensional figures. As we started to plan this, we also had input from clinicians in gender clinics in Stockholm, Sweden (as this is a two-site study) and in Los Angeles where we started the study, with extensive learned experience of transgender and nonbinary individuals’ issues. Further, as part of the previous study and in the planning of the current study, we convened a Community Advisory Committee to obtain input on the project and on our recruitment and consent materials. This committee consisted of transgender individuals from Los Angeles and Sweden (some who participated and some who did not participate in our previous research), LGBTQIA+ Centre leadership, trans community organizers/advocates, and clinicians with expertise with LGBTQIA+ populations. Also, nonbinary and transgender individuals on our research team in Los Angeles strongly shaped the overall project and the design of Somatomap GD. Input from all who have been involved has been critical not only to shape Somatomap GD and the research study but also to ensure that a) the results of the research could benefit those impacted in the community, b) that risks are minimized and consideration of this population’s risk of being vulnerable is at the forefront, c) that all of the steps of the research are thoroughly described to potential participants before they consent, such that they could choose not to participate if they anticipate it would be too difficult for them.
Importantly, the Somatomap GD current research project’s primary aim itself is to engage transgender and nonbinary individuals with gender dysphoria to obtain feedback about the effectiveness and usability of the Somatomap GD app. This will help to determine if, among other questions, a personalized version is better than a non-personalized version at representing one’s current body and one’s gender-identified body. This information will be used in the next-step research to help us adjust Somatomap GD to fit the needs of transgender and nonbinary people.
Can you give an example of where the study design required particular care to meet the needs of transgender and nonbinary participants?
One of the inherent risks to this study is related to participants’ experience of gender dysphoria. In the study, participants view a 3D model of their own body and adapt it to create their gender-identified body. This could be uncomfortable or spark feelings of gender dysphoria, so we took extra care to mitigate this risk for participants. One example is that we use a very thorough informed consent process, where participants are told about the study in detail, including a demonstration video which shows what the procedures and app look like. Visually seeing what is involved in the study helps participants determine if they would be comfortable doing the study in a way that traditional text-based study descriptions alone do not. Informed consent is common to all of our research, but with Somatomap we went further to include the video so that transgender and nonbinary people who choose to participate can be as comfortable as possible.
Since this is a two-site study, how does that impact the interpretation of the results?
This study is being conducted in Stockholm, Sweden and in Toronto, Canada. As results come in, we will be able to determine if there are regional differences in experiences and input at the two different sites, and if/how this relates to different demographic, social, political and cultural factors. This includes for example, how differences in access to care and type of care in the two cities might lead to differences in needs with the app. This will help us understand if different versions of Somatomap GD might need to be created and used to best-fit users in different regions and/or of different demographics.
How has your background in psychiatry and neuroscience impacted the way you approach this research?
As a clinician and a researcher, my ideas for research and my motivation come from people I have worked with who experience struggles and have reached out for help to live better lives. Over the years I have treated many transgender and nonbinary individuals with gender dysphoria (and some without gender dysphoria) for anxiety, depression, or OCD, and have heard their stories about their experiences with their bodies and their interactions with other clinicians, including those involved in gender-affirming care, providing a strong inspiration for me to initiate this study. As a researcher, the overarching theme of the research program I direct – the Brain, Body, and Perception Research Program – is to improve the understanding of the brain, behaviour, and subjective experiences to develop improved treatments. As such, I also am involved in lines of research, separate from research involving individuals with gender dysphoria, to study individuals with psychiatric disorders involving body image distortions such as those with body dysmorphic disorder and those with eating disorders. The experiences of these populations regarding their bodies and appearance are, of course, different from those with gender dysphoria.
When we first started to plan Somatomap GD, we had different versions of Somatomap (a 2D and a 3D version) that we were developing as a research and clinical tool for individuals with anorexia nervosa, and later for those with body dysmorphic disorder. We thought we could make a version of Somatomap for this separate line of research, to meet the needs of individuals who instead have gender dysphoria. As their experiences and issues are vastly different than those with anorexia nervosa, and the ultimate clinical uses would also be completely different, the tool would need to be modified and changed. Somatomap GD is a specific version that we created for (ultimately) the clinical needs of transgender and nonbinary individuals.
Thus, although we have also developed a Somatomap tool for other populations that we separately conducted research with, aside from similarities in being a tool to represent one’s experiences related to one’s body size and shape, the type of research we do, and ultimate potential clinical applications, are starkly different.
What can you say about this research in the context of current political climates?
As a researcher and clinician, I know that research does not happen void of context. We are living in such challenging times, where transgender and nonbinary people are facing numerous issues resulting from transphobia and inequitable treatment. Among these, they are being denied access to gender-affirming care that is critical to their health and wellness. Even here in Canada, we know that wait times to access gender-affirming care are far too long.
My hope is that tools like Somatomap GD will support transgender and nonbinary individuals in communicating with gender-affirming clinicians about the specific ways that their bodies are not congruent with their gender identity, thus supporting and enhancing their gender-affirming care. Work like this shows that we, as a team, an institution, and a society, value the lives and well-being of transgender and nonbinary people, and that their needs deserve to be addressed.
What are you most excited about for the future of this project?
In the near-term, I am excited to find out from the participants in our study what their experiences have been with Somatomap GD, if a personalized or a non-personalized version is substantially better, and what changes we should make, if any, for the next version of it. In the longer term, I am excited to plan and conduct the next phase of the research to see how well this can work for a broader group of transgender and non-binary individuals seeking gender-affirming treatments. This could help them communicate with their clinicians about their experiences of their bodies to assist in planning and receiving treatment to help their bodies be more congruent with their gender identity. We also can study how well the tool works for people to communicate their body congruence after receiving the treatments. Thus, the next steps will also be an ongoing collaboration with the community to understand their needs at different parts of their journey and how this tool can best help them. With a team of people with lived experience with gender dysphoria, researchers, and clinicians, this clinical translation is what we are all working together for.