Taking the pulse

“An FTM [female-to-male trans] friend of mine, who was a contractor, cut a tendon in his thumb. He almost didn’t go get surgery when he realized he would have to have his chest exposed and he hadn’t had top surgery,” recounts researcher Greta Bauer, assistant professor of epidemiology and biostatistics at the University of Western Ontario. Bauer cites this among the experiences that inspired her research into healthcare access for trans people.

Bauer is the lead investigator — “the stats geek” — for the Trans Pulse Project, a major research project funded by the Canadian Institutes of Health Research. Phase one involved qualita-tive research to find out what health issues were of concern to trans people. This information formed the basis for a survey to be launched on Mon, Feb 2. In this second phase of the project the team will survey 1,000 trans people in Ontario age 14 and older. In phase three the team will conduct follow-up interviews to build a deeper understanding of their health concerns.

“People ask us how many people are we talking about? A dozen? Fifty? When we say 1,000 no trans people have reacted with shock, but a lot of non-trans people have,” says Bauer.

According to the most-frequently cited statistics — a 1993 study conducted the Netherlands suggesting approximately one in 11,900 males and one in 30,400 females will undergo sex reassignment surgery — there should be about 500 trans people in the entire province. But according to Bauer, Toronto’s Sherbourne Health Centre (SHC) alone serves more than 500 trans clients.

Rather than relying on sex reassignment surgery as the defining criteria for participants Trans Pulse is taking a broad definition of what it means to be trans, including those who identify as transsexual, two-spirit, genderqueer and anyone with a history of having transitioned regardless of how they identify now.

“When it comes to a community that’s largely invisible and that people perceive to be smaller than it actually is it’s easy for policymakers to blow off the research, saying it’s not rigorous or there’s no reason to change a policy or protocol because it won’t affect anyone,” says Bauer, “so we wanted a survey large enough that couldn’t be ignored.”

According to Jake Pyne, the project’s community development coordinator, “This size of research with trans people has never been done before, on this scale and with this method. It will be much easier toprove that social exclusion and transphobia are damaging to our health.”

The method in question is respondent-driven sampling (RDS) in which participants recruit other participants from their personal networks. “With RDS you reach a much broader group of people than with other methods,” says Bauer. “The goal is to make sure that all these voices get included in this research.”

Trans Pulse is a community-based research project; the majority of the people working on it are trans themselves. “There are nine trans people on the research committee,” says Pyne, “along with three allies; plus the 16 of us working in outreach. That means there are 28 minds providing input on every issue.”

Those 28 minds include employees of The 519, SHC, the Ontario HIV Treatment Network, TGstation.com, Rainbow Health Ontario, Wilfred Laurier University and Western. The 16 members of the project’s Community Engagement Team — whose roles include survey design assistance, launch event coordination and planning dissemination of the results — are spread throughout the province.

The survey, which takes 60 to 90 minutes to fill out, includes questions about healthcare access — primary care, emergency care, mental healthcare for both trans-related and non-trans-related issues and AIDS/HIV-related healthcare — as well as questions about income and employment, housing, social support, sexual health, emotional wellbeing, drug and alcohol use and more.

“Some of the basic measures on social determinants of health and basic healthcare [used in the questionnaire] we’ve designed to be comparable to the Canadian Community Health survey so we can look for disparities,” says Bauer.

Information sessions are being held throughout the province. “In addition, we’ll be speaking with youth groups, doing street outreach and speaking with people in shelters and university centres,” says Pyne.

“We’re really counting on community buy-in,” says Bauer. “So little research has been done and so much of it has been medical research on transition or ideological research on why trans-sexuality exists, which makes some people queasy and is not directly relevant to people’s lives, so we’re banking on people finding this as important as we do.”