Researchers are hoping that LGBTQ people celebrating at Pride festivals will take 15 minutes during the revelry to share information about their health and experiences with health-care and social services.
The Community-Based Research Centre (CBRC) is sending researchers who are part of LGBTQ and two-spirit communities to more than 20 Pride events across Canada to collect data for the "Our Health" study, with a focus on chronic diseases such as diabetes, cancer and fibromyalgia.
The experiences of transgender, gay, bisexual, lesbian, queer and two-spirit people living with chronic diseases, including the impact of COVID-19 and their access to services, have been underrepresented in health research, said Anu Radha Verma, chronic health research manager at CBRC.
"For so long when we talk about queer and trans and two-spirit health, we only have talked about sexually transmitted and bloodborne illnesses," Verma said.
"We really need to be talking also about all of these additional dimensions of our health.”
The survey also asks participants about "how they navigate" health issues, including whether their health costs are covered by public or private insurance, she said. It also asks about substance use and experiences of discrimination.
The survey responses are anonymous and confidential, Verma said.
The CBRC did an "Our Health" study last year, but it was all online and took 30 minutes to an hour to complete. This year's survey only takes about 15 minutes to do and it's the first time that researchers are going out to Pride events to recruit participants, she said.
Having quality health data is critical to pinpointing what kinds of changes are needed in health-care and social services, as well as developing prevention programs and securing funding, Verma said.
“When we look at the resources that are available out there, whether those be public education campaigns or groups and all of that, we don't really see queer and trans and two-spirit people represented in those," she said.
"So there's an opportunity for our strategies around chronic disease to be more attuned to queer and transgender and two-spirit people's lives."
The act of doing the survey itself is also important to ensuring that LGBTQ communities have a voice in health care, said Alphonso King Jr., a community leader, activist and drag queen in Toronto known as Jade Elektra.
"It is no different than a person of colour seeing themselves represented in television or in film or any of those things," King said.
"When you actually realize that people recognize that you exist, it is so important."
Although Pride weekend in Toronto, which starts on Friday, is largely a "party atmosphere," King is encouraging people to take the time to participate in the study.
"If you have the opportunity to take the survey, please do because your information is just as important as everyone else's and it could actually form and change the way things are done in the future," King said.
The CBRC aims to get about 10,000 people across Canada to complete the survey, Verma said, noting the reception was positive at Pride events they've already attended in Winnipeg, Regina and Saskatoon.
At Pride Winnipeg alone, almost 800 people participated, she said.
People can scan a QR code and do the survey on their phones, or they can use tablets provided at the event, Verma said. It can be done in English, French or Spanish and participants receive a $10 honorarium.
The "Our Health" survey is an important way to build trust between LGBTQ2S communities and the health-care system, as well as drive improvement, said Daniel Grace, Canada Research Chair in Sexual and Gender Minority Health and associate professor at the Dalla Lana School of Public Health at the University of Toronto.
"We know that many people experience health care in really negative ways due to transphobia and homophobia, to anti-Black and anti-Indigenous racism," said Grace, who is a past board member and a contributing researcher for CBRC.
"It's essential that we not only collect information to better appreciate barriers to health services, but that we action on that, we mobilize on it, we hold health-care providers and governments accountable," he said.
The "Our Health" survey team will be at Pride events this summer:
In June: Toronto and Steinbach, Man..
In July: Victoria; Sudbury, Ont.; Fredericton, N.B.; Halifax, N.S.; Charlottetown.
In August: Bathurst, N.B.; Vancouver; Saint John, N.B.; Montreal; New Westminster, B.C.; Edmonton; Ottawa; Sherbrooke, Que.; Calgary; St. John's.
In September: Quebec City.
This report by The Canadian Press was first published June 22, 2023.
Canadian Press health coverage receives support through a partnership with the Canadian Medical Association. CP is solely responsible for this content.
Nicole Ireland, The Canadian Press
