When Greta Bauer submitted her first grant proposal to the Canadian Institutes of Health Research (CIHR) 15 years ago, she had to convince reviewers that the research team was going to survey more trans people than should exist in Ontario.
Research data at the time estimated there should be about 550 trans individuals in the entire province. This, despite one health clinic in Toronto caring for as many patients as the data suggested.
"When I first started this work, there was so much invisibility," said Bauer, professor and CIHR Sex and Gender Science Chair. "People didn't understand the importance of doing research or implementing inclusive policies because they imagined that trans people were so vanishingly rare; that trans people were not going to come into their clinical practice, or work with them, or even be their doctor."
Greta Bauer
Bauer is part of a team of researchers at Schulich Medicine & Dentistry focused on the health and well-being of trans and non-binary people. Working in collaboration with diverse communities across the country, they are striving to empower educators, inform policy and improve access to care.
Nearly half of all transgender and non-binary Canadians who responded to a 2019 national survey revealed having had one or more unmet health-care needs in the past year, and 12 per cent avoided the emergency room, despite needing care.
The results reflected what many people already knew. "Community knowledge of this existed long before we documented it," explained Bauer. "Within the trans community, everyone knew this was happening."
The Trans PULSE Canada survey, led by Bauer and Ayden Scheim, PhD'17, professor of epidemiology and biostatistics, collected data from nearly 3,000 participants. Survey questions addressed mental, physical and psychological health, as well as access and barriers to care.
"We wanted to capture the experiences of trans people as a community or population, not as a patient group," said Bauer. "People are in contact with the medical system only at particular points in their life, and they may not be at all with regard to their gender. There is a broader group of people whose health is being impacted through social exclusion, and that aspect of trans health was not being captured."
Trans youth insights
Ayden Scheim
To date, the project team has published six reports detailing the survey data. The latest report, published in June 2021, focuses on trans and non-binary youth between the ages of 14 and 24. Among respondents, one in five had avoided schools in the past five years for fear of harassment or outing.
"Strategies should consider how to promote supportive environments at home and at school, as social support from family and friends protects trans youth against mental health issues, even in the face of discrimination and stigma," a recommendation from the report said.
Most trans people recognize their gender at a young age - research shows that 80 per cent know their gender is different by age 14.
Trans Youth CAN!, a cohort study involving 10 clinic sites across Canada, is looking at the health experiences of youth, from puberty to less than 16 years of age, who are accessing gender-affirming care, including puberty blockers and hormones.
The study follows participants for the first two years they attend the clinics, gathering data from a variety of sources, including interviews, surveys and clinical records. The research team is also interested in the well-being of parents, caregivers and families.
"We're looking not just at the medical and psychological outcomes, but family and social outcomes as well," said Bauer, co-principal investigator. "For youth at this age, life is really heavily about family and about school - that is much of the context for their lives."
As part of the survey questions, the research team developed new measures of gender distress and gender positivity, with sub-scales to measure distress or positivity related to the body, differentiated from distress or positivity related to social gender.
"What we're finding in our initial analysis is that most youth have really high levels of gender distress, but simultaneously have high levels of gender positivity," said Bauer.
Inclusive health care
Dr. Jeffrey Campbell
"We know the current system is hard to navigate, and we want to design a more inclusive system that trans people can access efficiently and comfortably," said co-investigator Dr. Jeffrey Campbell.
As a urologist, Campbell sees trans patients regularly in his work, and has encountered challenges in connecting patients to resources or making referrals to other specialties. The multidisciplinary research team includes faculty members from plastic and reconstructive surgery, obstetrics & gynecology, urology and endocrinology. "As specialists with a common interest, it's essential that we work together to optimize care and training," said Campbell.
(This article is an abridged version of the original story published in Schulich Medicine's Rapport magazine.)
