People who use drugs seldom have much sway in the studies they're the subject of, or the government policies they're subjected to. A peer-led, community-based research project in Alberta is working to change that while filling knowledge gaps in the relationship between cannabis use and mental health for in-risk people.
The Cannabis As Relief in Mental Health and Addiction (CARMHA) Project is coordinated by AAWEAR (Alberta Alliance Who Educate and Advocate Responsibly) and Habitus Collective, and has involved people with lived experience in every step of the project, from design to data analysis. The project team started with overarching questions around cannabis use, legalization, and stigma, with the aim of "bringing voice to a different community, a community that hasn't actually had a lot of say in the types of research that have come out around cannabis," said Lisa Elford, principal consultant with Habitus Collective.
"What we were interested in was not necessarily the causative link, but understanding the role that cannabis plays in people's lives. And the group that is naturally connected with AAWEAR is folks who are living rough, usually houseless populations, or who have used or have a history of concurrently using other substances," Elford said.
AAWEAR is an advocacy group made up of people with a history of hard drug use, and it is active in street outreach, education campaigns, and pushing for policy reform. The maxim "nothing about us without us" that guides the organization's daily work was also essential to the CARMHA Project's objectives.
"We wouldn't have applied, and we wouldn't have put this project together, if we couldn't have that level of peer support, peer interaction, and lived experience knitted throughout the whole project," said Elford.
Cody Stephen, a peer researcher with AAWEAR, said his own experience with addiction and as an outreach worker in Edmonton made participants more comfortable completing their survey.
"It takes me back to when I was in their shoes, when someone came up to me and asked me if I want to do a survey. I'm like, 'Oh, yeah, for sure. Is there money involved?'" Stephen laughed. "But that was not always the pitch when we were out there. It was about if they want to help with policies and practices in the future. And a majority of them were all about it."
Participants were given a gift card, but Stephen said he avoided mentioning the reward early on for fear that people would just rush through the survey. Instead, he leaned toward conversation and relationship-building to get interviewees to dig deeper and share their experiences.
"When I share my story with the client that we're interviewing, it opens up doors of remembering," Stephen said. "There is a comfort there with someone with lived experience, with that same background, or a similar background, and it opens up a lot more to the research itself."
This approach has given "a lot more richness to the data," said Erika Lemon, a research associate with Habitus Collective. "The model that we took with the study design is we didn't just involve them in data collection, we've involved them with analyzing the data, we tried to involve them with every single step along the way."
In the fall of 2019, the Mental Health Commission of Canada announced funding for 14 two-year projects to study the relationship between marijuana use and mental health in priority populations. CARMHA was one of the last projects to be funded from that pool, in January of 2021, and the team had to "hit the ground running" once it received word that the project had been green-lit, Elford said.
"AAWEAR had all these fantastic peers that were already working within the organization, and we also have worked with AAWEAR a lot in the past around their evaluation, programming, and training. ... That's why we were sort of able to get up and going quite quickly."
The CARMHA Project is currently scheduled to wrap up at the end of September, but the team is hoping to get an extension to continue its work. Results from the study will be posted on the project website as they become available and shared in community events, keeping with a "knowledge mobilization strategy" meant to keep participants and community members informed and involved.
"We are starting to understand that people are using cannabis in lots of different ways, that it is strongly connected with their other substance use. It is highly connected (to) what's happening in their life, where they're living, who they're connected with. We will hopefully have some really strong policy recommendations to come out of this as well," said Elford.
"We think that the policies that can come out of that understanding might be a little bit better and a bit more impact-focused when it comes to programs that actually impact people's lived experience with this substance."