Primary health care delivered with compassion and understanding—this is the focus of a new patient-orientated study asking people who use drugs to shape their own primary care. While most people don’t think twice about whether or not they’d be welcome at their doctor’s office, for those living on the margins, stigma can be a huge barrier to accessing basic health care.

That’s why a group of Victoria researchers are getting together. It’s an effort to have primary health care meet people where they’re at so they can get the help they need. And the first step is figuring out what that looks like by asking the very people who would benefit from it.

The study brings together a diverse group of Greater Victoria organizations and individuals including the Centre for Addictions Research of BC, Royal Roads University, the Society of Living Illicit Drugs Users, the Umbrella Society, the Victoria Division of Family Practice, and Island Health. Primary care is the day-to-day health care from a healthcare provider, and it’s often the first point of contact into the health-care system.

According to Karen Urbanoski—Canada Research Chair in Substance Use, Addictions and Health Services Research and a scientist with CARBC—one of the questions the study will be asking is what safe primary care looks like to individuals who have a tough time getting it.

Peer-driven research
“The way that we collect our data and who we talk to—that will all be driven by our peers,” she says. The peer members of her research team are going to help make sure the questions being asked are not only correct, but are being asked of people with lived experience.

“They'll be leading the data collection themselves and we'll be working together to make sense of the findings and generate our full reports to share,” Urbanoski says.

The new study builds off a previous one the Centre for Addictions Research of BC released in 2013, which focused on creating culturally safe care in hospitals for people who use or have used illicit drugs. Culturally safe care represents a shift in the power dynamics of health care in that the recipients of care decide what is safe or unsafe as opposed to the providers dictating the terms of care.

“It’s pretty difficult for people who use substances and who also experience disadvantages related to poverty, homelessness or racism,” says Urbanoski about those trying access care. “They’re experiencing barriers around anything from the location of services to their hours and when they can go in to see healthcare providers, to the way that they feel they’re treated when they get there.”

Security cameras are just one example of a barrier for some individuals. The cameras can stir-up past negative experiences and create an environment where people feel unsafe or paranoid, according to Urbanoski.

Eliminating barriers
One of the goals of the study is to see what it takes to get people to seek out and stick with basic care.

Even if someone gets care, past negative experiences can often lead to abandoning treatment before it’s complete. People with current, past, or even presumed drug use often shy away from accessing care to avoid facing stigma from health-care providers.

“Developing relationships, valuing the experience of people with lived experience in a way that is fully respectful and brings that perspective, and the learning they’ve had, to the table in a way that can impact the effectiveness of the research,” says

Cindy Trytten, Island Health Director of Research Capacity-Building and BC SUPPORT Regional Centre Lead, about he value of patient-oriented research.

The regional centre Trytten leads was created to expand and support patient-oriented research, which partners with people with lived experience, whether they have personal experience or are related to someone who does.

“Lots of compassion flows in the research. Sometimes people think of research as numbers and statistics and people in white lab coats but that image isn’t true. These are human beings driven by compassion and caring,” says Trytten.

With overdoses in B.C. resulting in as many as four deaths a day, the research hopes to better engage with people who are living through the worst drug overdose epidemic on record.

“It’s important—the types of research that we're doing—particularly if it's research that's being done for and with people who are socially marginalized or who may not have a great deal of power when it comes to setting policies and navigating their own health care,” says Urbanoski.

Patient-oriented research can change the scope of care offered simply by asking the very people who feel disenfranchised by the system how it can better serve them and their peers.

“I think what this research will be really good at doing is giving us insight into processes not just for culturally safe primary care, but for how we can work together,” says Urbanoski.