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The Trans PULSE Project: Overview
The Trans PULSE Project is an exciting community-based research (CBR) project that responds to problems identified within Ontario trans communities regarding access to health and social services. We are particularly interested in understanding the ways in which social exclusion, cisnormativity (the belief that trans identities or bodies are less authentic or "normal"), and transphobia shape the provision of services for trans people. We also want to know how these in turn may affect health. Some of the things we will be studying are income stability, housing, relationships and family, sexual health, HIV vulnerability, mental health, community connectedness, access to social services, health care services, and hormone use.
The Project is unfolding over multiple stages. Initiated in 2004, Trans PULSE is now funded through 2010. It involves both qualitative (focus group and interview) and quantitative (survey) components, as well as action stages. Together these approaches will provide information necessary to change policies and practices to improve the health of trans communities. Funding for Phase I was provided by the Toronto-based Wellesley Institute and the Ontario HIV Treatment Network. Funding for Phases II and III has been provided by the Canadian Institutes of Health Research.
As a CBR project, the involvement of community members at all stages of this project is crucial as we strive to ensure that the research is meaningful, relevant, and empowering. The Trans PULSE Project "Investigators Committee" is comprised of three allies and seven community members who contribute their unique personal and professional experiences and skills to ensuring the success and relevance of the research and its outputs.
Trans PULSE is part research project and part activist information network. We strive to undertake high-quality research that fosters greater understanding about the health of trans people and that will make a real difference in our lives. Through synthesizing existing studies and mobilizing the findings of our own research, we hope to engage community members, providers, activists, lobbyists and allies working to improve the health and well-being of trans people in Ontario and beyond. We continually aim to develop the capacity and knowledge base of other health researchers so that their work can be more inclusive and relevant.
The Trans PULSE Project Team
Together, we bring to this project a broad collection of skills and expertise and a shared passion for community-based research and its potential to effect change. To this breadth, our team adds the depth of lived experience and the often painful "real life" knowledge of the ways that mental, physical and social health are impacted by social exclusion for trans people, and the vulnerabilities that are created despite people's best attempts to cope and live life with integrity. This combination of broad skills and deep understanding bring about the potential for our team to effectively work more broadly with Ontario's trans communities to produce new knowledge. This knowledge will in turn be used in programme development, action for policy change, service improvement, and to provide trans people with the information necessary to best make decisions regarding their own health.
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Greta Bauer, PhD, MPH, Principal Investigator |
Greta is an Assistant Professor in Epidemiology & Biostatistics at The University of Western Ontario. Her primary research interests are in sexually transmitted infections and the broader health of sexual and gender minority communities. Coming from an interdisciplinary background, her work has spanned the biological, behavioural and social, with a strong emphasis on quantitative research methods. A long-term ally, she is committed to improving the health of trans communities. |
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Michelle Boyce, Co-Investigator |
Michelle is a vocal advocate for trans equity, and the founder of TGStation.com, a group that provides anti-transphobia workshops to groups ranging from school classrooms to large corporations. An independent business owner, she has provided technical expertise to build IT infrastructure for this project, and combines these skills with her deep knowledge of trans communities in Southwestern Ontario. |
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Todd Coleman, BHSc, (PhD cand), Project Manager |
| Todd has several years of management experience and uses this to help coordinate day-to-day activities of the project. He has a degree in Health Sciences and is currently working towards a PhD in Population Epidemiology at The University of Western Ontario. He is also an active volunteer at the AIDS Committee of London and is also a Co-Principal Investigator on the Health in Middlesex Men Matters project. |
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Rebecca Hammond, BA, (MSc cand), Co-Investigator |
Rebecca contributes her knowledge of trans youth issues, her HIV research experience and her enthusiasm for community-based research. She is currently the co-facilitator Trans Youth Toronto and a sexual health counselor at Hassle Free Clinic. Rebecca is completing an MSc in Community Health & Epidemiology at Dalhousie University (Halifax); her OHTN-funded thesis is addressing how trans youth in Ontario come to experience vulnerability to HIV. |
| Anjali K, Co-Investigator | |
As a 28 year transgendered woman of color, I believed that life couldn't be led in high happiness until i came to Canada and realized that such a life is possible. With that hope, I have transitioned to be a woman with courage, compassion and clarity. It has been a rough yet challenging journey. My passion is to spread the word in this world, that despite its conformities, there are souls that exist to enhance its society and each person is a remarkable individual devoid of their appearances, identities and backgrounds. |
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| Matt has experience counselling individuals with substance use histories as well as experiences of trauma. He utilizes anti-oppression and harm reduction philosophy in his work with clients and in fostering partnerships with organizations that provide services with individuals who are socially marginalized. |
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Jake Pyne, Community Development Coordinator |
Jake has a background in sexual health education and sexual assault prevention work. For the past 6 years he has coordinated the Trans Shelter Access Project at The 519 Church Street Community Centre. This project advocates for trans access to Toronto's emergency services and hires and trains trans people to be trainers in the shelter, housing, and violence against women service sectors. |
| Nik Redman, Co-Investigator | |
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Kyle Scanlon, Co-Investigator |
Kyle Scanlon is a trans activist, researcher and front-line community worker who strives for social justice and has a passion for community mobilization. He's been a member with the Gay Bi Queer Trans Men's Working Group which created the FTM sexual health resource PRIMED, he was a Co-Principal Investigator and co-author on the FTM Safer Shelter Project's report "Invisible Men: FTMs and Homelessness in Toronto" and a Co-Investigator on the "Trans Pulse Project", a research initiative documenting the ways social exclusion impacts on the health and well-being of trans people. Kyle currently serves as the Program Coordinator for Trans Programs at The 519 CSCC and continues to provide expertise on trans access, service, and equity issues to a wide range of organizations and across Ontario. |
| Kenji Tokawa, Co-Investigator | |
Kenji was born, raised and currently resides on Mississaugas of the New Credit territory. He is a writer, t-shirt maker, and grandson who's work has been published in CultureSHOCK! Queens University Anti-Racist Lit Review, Rice Paper Magazine, and two self-published chapbooks entitled 'Missing the Moon' and 'Handbook for Students'. He recently had his poetry featured at Pride Toronto's 2009 Proud Voices Literary Stage. Kenji is also program co-ordinator of both the Toronto Asian Arts Freedom School and GenderFOC writing workshops for trans/gendervariant folks of colour, and workshop facilitator with the 519 Trans Access Project providing trans-positive training to service providers and students. He is also bitterly trying to finish an undergraduate degree in Equity Studies and Diaspora Studies at the University of Toronto. |
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Anna Travers, MSW, Co-Investigator |
Anna has a background in health and social care with a focus on marginalized populations. She has occupied management positions for the past 20 years, most recently as the program manager of a new comprehensive health care program for LGBTT people at Sherbourne Health Centre. It was in response to the overwhelming demand for services from the trans community in Toronto and beyond that Anna initiated the idea of conducting research on the health of trans communities and wrote the first grant to obtain seed money. |
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Robb Travers, PhD, Co-Principal Investigator |
Robb is an Assistant Professor in the Community Psychology Program at Wilfrid Laurier University. He maintains an active community-based research program that seeks to understand HIV "risk behaviours" in broader social context and the development and impact of interventions at various levels (individual, community, and structural/societal). He is also interested in factors that impede emotional well-being of lesbian, gay, bisexual, and transgender youth as well as people living with HIV/AIDS. He is an advocate for community-based research approaches as a tool of community empowerment and social change. |
A big thanks to the following people for their contributions to the project:
Scott Anderson
Melisa Dickie
Broden Giambrone
Jason Globerman
Karin Hohenadel
Nicole Kaysen
Nooshin Khobzi
Rupert Raj
Sydney Tam
Brady Yu
Everyone who participated in the Phase I soundings
Everyone who has participated so far in the Phase II survey
Strong Methodology
The overarching goal of our work is to undertake high quality research that sheds light on the challenges experienced by trans people in Ontario, and the positive and negative health outcomes that these challenges may lead to. For Phase II of our research, currently underway, we're using a particular approach to research called respondent-driven sampling (RDS). By using RDS, the data we collect will more closely represent the whole population of trans people in Ontario. This means that activists, lobbyists, and community members will not only have the statistics they need to argue for programme funding or political change, but that these statistics will stand up to challenges from those who would rather just dismiss our communities or our concerns.
Relevant and usable data
Because this project was initiated, incubated and directed from within trans communities, and because we've sought input from community members beyond those on our study team, the information we produce should reflect the concerns and issues of our communities.
Most previous research has unfortunately been conducted by academics who consider us either as patients or as "fascinating subjects" to examine, and are not necessarily aware of community views or concerns. A few studies have been previously conducted by trans community members or allies; while important, they were done with limited resources and are thus of limited scope. Our goal is to produce large amounts of relevant quantitative (statistics) and qualitative (quotes and stories) information on a range of important health issues and to provide it in a variety of forms that can be used by community groups, individuals, doctors, policymakers, and advocates.
What we'll be looking at
Given that there's very little information on trans health, we are developing research that will provide important information about the health of trans communities in Ontario. We'll be gathering information on the degree to which trans people experience exclusion in housing, employment, social services, health care, education and broader social participation (e.g. gyms, religious institutions) as well as understanding how and why this exclusion takes place. For some of these areas, we'll be able to compare to Ontario population rates, so we can document for policymakers the unique ways in which trans people may experience social inequality, and how that inequality may impact health and well-being. Some of the things we are interested in studying include: income stability, housing situations, relationships and family, sexual health, HIV vulnerability, mental health, community connectedness, access to social services, health care services, and hormone use.
How we approach research
The Trans PULSE Project understands research as a tool for advocacy and social change. Community-based research (CBR) is an approach to research where diverse partners (including community members) join efforts and commit to identifying, researching and providing solutions to complex health concerns facing a community. CBR is particularly effective at mobilizing the efforts of community members on important issues where they would like to see change. Trans people have been and are involved in all aspects of this project including its initiation and design, and have ongoing control over major project decisions.
How we understand health
We understand that health involves more than medical care and we understand how important access to trans-positive high quality medical care is. The Trans PULSE Project understands health as inclusive of physical, mental, emotional, spiritual and social dimensions. We use a multi-faceted approach to documenting the lived experience of trans people in Ontario. In particular, we use a "social determinants of health"approach to understand the way in which health for trans people is shaped by broader social, cultural, political, and economic forces. As such, we are interested in identifying the impact larger forces have for trans people in their day-to-day lives.
How we understand HIV issues in trans communities
While our project will be studying a variety of health-related areas, we want to address the inclusion of HIV issues here. It's a topic our team has had many discussions around. We recognize that not everyone who is trans has, or is at risk of acquiring, HIV. We also understand that we need to be cautious about not adding stigma to our communities. However, we decided that HIV issues were important to include in our study for two reasons:1) HIV rates have been shown to be very high in research studies on trans communities across North America. However, these studies have typically NOT involved a broad spectrum of trans community participants, and the results may or may not be true more broadly. In our work, we will be able learn how factors that impact risk are distributed, and see to what extent this varies across our communities. This may help shed light on the accuracy or inaccuracy of these previous studies.2) While we will not be measuring HIV rates directly, we are interested in the extent to which our communities are vulnerable to HIV, and the extent to which trans people who are living with HIV receive appropriate care. In wishing to understand the conditions that give rise to HIV in our communities, we draw from a growing body of literature that understands HIV as an epidemic that disproportionately affects those that experience discrimination and social exclusion and we hope to shed light on how this specifically takes shape. We are committed to presenting our results in a way that is respectful and not stigmatizing.
How we understand "trans" and gender-based oppression
The Trans PULSE Project recognizes the diversity of experiences and identities that people in Ontario have. We see "trans" as being a term that includes both those who are transsexual in other words those who take physical and social steps to live as a gender different from the one assigned at birth as well as those who are transgender, genderqueer, and others with similarly gender-variant lived experiences. While we certainly understand that some people have "trans" identities, we also recognize that many "trans" people may not identify as such. They may have transitioned at some point in their life and identify as "women or men of trans experience" or, even more simply, as "women" and "men".
We recognize that gender-based oppression affects people based on who they are, what they look like, and where they've come from. People in our society can experience discrimination and social exclusion when their gender expression or their bodies differs from what's considered "normal" Alternatively, people can experience discrimination or have problems accessing services not necessarily based on what they look like but on where they're coming from or because of what they need for example, there are challenges to accessing sex reassignment services that may have nothing to do with what a person looks like.
Our ethics / our commitment
Like most groups, we have many individual reasons for doing what we do. What we share is a deep commitment to improving the health of trans people, and to working for greater access and equity for trans people in all facets of society. We all committed to this project in either 2005 or 2006, and have put in uncountable hours of work. We're in it for the long haul, and expect that our work together will go on beyond the three-year-long "Phase II and Phase III" of our research.
As we go about this research, we've made the following commitments:
- conduct research that is respectful to trans communities and never stigmatizing
- build capacities for research within trans community
- conduct research using the highest quality methods possible, so that results have broad credibility and cannot be dismissed as insignificant or weak
- ensure results have the maximum positive impact possible, and never sit in a file cabinet where no one can see them
- ensure the involvement of trans community members in a way that goes beyond traditional community-based research approaches
We look forward to building on a new tradition of trans health research that is responsive, responsible, high-impact, and ethical in every sense.
Mixed methods research
Our research involves what is called "mixed methods research." This means that we go back and forth between gathering highly detailed information from smaller numbers of people using discussion groups or interviews (i.e. qualitative research), and gathering information from large numbers of people using surveys (i.e. quantitative research).
In our first phase, we held a series of soundings with trans community members to get perspectives on health and health care issues. We also held an online sounding for peer and professional service providers to see what affected their ability to provide the best care possible to their trans clients or patients. What we heard loud and clear is that health and social service delivery is highly problematic, with trans people having negative experiences and difficulty getting the services needed, and providers lacking training and information to meet the needs of their trans clients or patients. Access to health care and social services were not the only areas where there were difficulties; employment, housing and relationships were issues for many as well. There was a high level of frustration expressed all around, and clear indications that the system is not working.
We used the information generously shared with us in Phase I to design Phase II of our work, measuring levels of social exclusion and its impact on the health of trans people in Ontario. If all goes as planned, this phase will be the largest proportional survey of trans people ever conducted. We will follow up our survey with Phase III: interviews with trans community members to make sure we're interpreting the results correctly and moving in the right direction.
We're excited about our survey because to our knowledge no one has ever had the funds available to do a large survey on trans health in Canada. We've given a lot of careful consideration to how to do this in a way that will include the most people while using the most rigourous methods (methods that doctors and policy makers will consider "legitimate"). We'll be gathering information on the degree to which trans people experience exclusion in housing, health care, education and broader social participation. For some of these, we'll be able to compare to Ontario population rates, so we can document whether trans people experience social inequality, and in what ways. We will also gather information on people's health so that we can see how inequality impacts health.
Our survey will be a bit different from other surveys. It will be multi-mode and involve a special method for recruiting participants through social networks, called respondent-driven sampling. A brief explanation of each of these characteristics follows:
Multi-mode survey
We want to enable as many trans people to participate as possible. We know that some people may not have regular access to a computer, while others may be connected to the community only by a computer. Our survey is available in different modes, each containing the same questions in the same formats. This means that participants can complete the survey in the way that is easiest for them. They may choose to fill it out online, and come back as many times as they need to complete it. If it's easier, we can mail a paper survey and a return envelope. For those for whom these approaches don't work, we are be able to conduct a toll-free telephone survey. Simply put, if you are recruited to participate, we'll make your participation possible!
Respondent-Driven Sampling
Our survey is a bit different from other surveys. It involves a special method for recruiting participants through social networks, called respondent-driven sampling.
The results of a lot of health surveys are not given the consideration they deserve because they are conducted with what are considered "convenience" methods. An example would be if we approached a handful of trans organizations and surveyed people present at events. While the people surveyed may be trans, it is unlikely that they would represent the range of trans community members, and certainly wouldn't represent people who can not or would not come out to attend public events. With RDS, participation begins with a number of "seeds," well-connected trans people around the province selected to represent a range of ages and communities. Seeds then recruit a limited number of new participants each, those participants recruit additional participants, and recruitment continues in successive waves. Though we won't know who is who, we will track who invited who, and how many potential participants each person knows. This information is used mathematically to allow us to calculate accurate statistics.
RDS has three advantages: 1) Since participants recruit other participants, we can reach people who do not belong to groups, or who are connected to trans communities only through other people. 2) We can use an advanced statistical technique to produce statistics that are as valid as if we could survey a random sample of trans community members who are willing to participate in research. 3) Because of these two advantages, our results will be considered much stronger than a similar survey with open recruitment. This is really important as we don't want people in power to be able to ignore or dismiss our results.
While it's difficult to explain how the statistics work in simple language, we want to let you know that we gave a lot of thought as to whether this technique was necessary. We know that some people may want to recruit more people than the method allows, and that others wont want to wait to be invited by a friend. It was a difficult decision, but we decided that the advantages far outweigh the frustrations. We're excited to produce really solid results.
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