Jaydee Cossar is a Community Engagement Manager at the CIHR Pan-Canadian Network for HIV and STBBI (CTN+) and the Centre for Advancing Health Outcomes in Vancouver, BC.
“I’ve lived in Vancouver for over 20 years,” Jaydee said. But he traces his roots back to the Prairies, having grown up in Saskatchewan in a dual community of Regina and a smaller Metis community.
Over the last two decades, he has worked in HIV advocacy and research, as a board member at the now-defunct Positive Living, an HIV and AIDS service organization in British Columbia, as well as taught leadership training courses for people living with HIV from 2015 to 2019 at PAN (formerly the Pacific AIDS Network). Since joining the CTN+ in 2022 as Community Engagement Manager, Jaydee has played a key role in the Network by ensuring that community voices are central to the governance and operations of the CTN+.
Community is the word when it comes to research
Jaydee, who identifies as a person living with HIV, stated that his path to taking on a community-centric role in HIV and other STBBI research came quite naturally.
“About four or five years ago, I started to work in the research field for the BC People Living with HIV Stigma Index, which was my first foray into research,” he said. The Stigma Index is a research project born out of a community-identified need to turn the tide against persistent HIV stigma and discrimination.
Jaydee credited this experience with kickstarting his love affair with research: “I learned the remarkable power of when the community comes into a project to inform the research right from the start, how powerful that was, and how emancipatory that was for people. Interviewing people for the Stigma Index was some of the most profound and powerful work I’ve ever done.”
So, what drives his passion for HIV research? “My own lived experience as well as the need for greater involvement of people living with HIV in research that is for and about them,” said Jaydee. “My driving force is making sure that everybody who can be involved is involved and that their voice is heard.”
Sound, ethical research needs to involve the community.
“In the early days, community engagement wasn’t really a part of HIV research. This exclusion birthed the slogan, ‘Nothing about us without us’ because there was always this persisting feeling that researchers had more power and knowledge than community members,” he said.
But things have changed in the last 10 years. Researchers are embracing community members a lot more in their work.
Jaydee referenced a quote from Dr. Cathy Worthington, a key researcher and leader at the CTN+: “We’ve now come to a point where we’re capacity bridging — where the community’s knowledge, their expertise, their background, and their lived experience is viewed as just as important, if not more important, than somebody with an academic background in research.”
For Jaydee, bringing those two elements together is a beautiful effort where one can learn from research, and from community members. “Together,” he said, “they create better outcomes for research.”
What it means for the Network, society, and the future of HIV research
In his day-to-day role with CTN+, Jaydee ensures that these powerful realities are demonstrated and championed by the Network. Grounded by his experience and passion for community engagement, Jaydee works with the Community Leadership Team (CLT), formally known as Community Advisory Committee or CAC which is comprised of people with lived/living experiences and/or supporting people with experiences with HIV or other STBBIs.
When asked if he’s seen a shift in the broader society’s approach to HIV and the community today, Jaydee was unsure.
“There’s still a lot of HIV stigma that general society must work through, and there’s still a lot of hate towards people with HIV. But I also think a lot more people now understand that it’s a treatable chronic illness,” he said.
Part of this understanding can be facilitated by improving education around HIV and fostering an active interest in making people better allies to the community.
However, the erosion of HIV advocacy and service organisations over the last five years is a setback in this learning, he pointed out. “A lot of organisations have either been defunded or no longer exist, like the Positive Women’s Network in BC, which means that there’s no specific programming for women now.”
When asked about his vision for the future of HIV and STBBI research, Jaydee noted that we’re living in the future. “Before CTN+’s most recent funding cycle, the community was actively involved in the research but not necessarily embedded in the processes. Today, they’re embedded in the Think Tanks, the Regional Teams, the community work and knowledge mobilization, and really from start to finish in supporting CTN+’s work.”
“Community members now play an important role not only in the research but also in formulating ideas and developing protocols,” he said.
In the interest of contributing to this shift, Jaydee is also a community engagement manager for CTN and Gilead’s new Community Science Champion Program, an initiative that will allow people living with HIV and STBBIs to develop a deeper understanding of clinical research in several areas, enabling them to participate meaningfully in research processes.
“We’re living the dream here,” he added. “In the next five years, I’d love to see community members doing their own research, so they can take on projects based on their own research ideas and become independent researchers themselves.”
