Study asks people using drugs to shape their primary care

Primary health care delivered with understanding and compassion for people who use drugs is the focus of a new Greater Victoria patient-oriented research study funded by the Canadian Institutes of Health Research (CIHR). 

Building on a previous study that examined cultural safety for hospitalized patients who use illicit drugs, the team will now study how this population experiences barriers to primary care. Health researchers from the University of Victoria’s Centre for Addictions Research of BC (CARBC) and Royal Roads University are partnering with a diverse team that includes community partners Society of Living Illicit Drug Users (SOLID) and the Umbrella Society, as well as the Victoria Division of Family Practice and Island Health.

One of the SOLID researchers participating in the study, Jill, says her reasons for involvement go well beyond just wanting to share her own anecdotes of trying to seek health care from providers who couldn’t see past their assumptions about substance use. 

“It was about sharing my story so that it could inform and educate,” she says. “We all know that research drives quality, quality means better care, and better care means healthier outcomes for patients in my situation. Patient-oriented research is research that fully engages us as partners.”

Having physicians alongside people who use drugs around the same research planning table has already been invaluable in raising awareness, notes Karen Urbanoski, a Canada Research Chair in Substance Use, Addictions and Health Services Research and scientist with CARBC.

“Part of the project’s role is to increase the awareness of the experience of people, to help primary care physicians understand what it’s actually like to try to seek health care for this group of people,” says Urbanoski. “It’s really challenging for people, whether they are drug users or face other disadvantages: Poverty, homelessness, violence, racism, colonialism. We see this work as the kind of thing that can be turned into training, and that will come up with a model for safe primary care.”

Bernie Pauly—a professor in UVic’s School of Nursing, a researcher with UVic’s Centre for Addictions Research of BC, and Island Health’s Scholar-in-Residence—has done research work with SOLID for 10 years, and sees the project as a vital initiative at a time when overdose deaths in BC are claiming the lives of as many as four people a day. “I don’t think primary care serves this population well,” says Pauly. “When you’re a person trying to survive day to day, the system just doesn’t work.” 

This study is the first patient-oriented research study supported by the BC SUPPORT Vancouver Island Regional Centre, a collaboration between UVic and Island Health, one of four regional centres in the province. The SUPPORT Unit (BC Support for People and Patient-Oriented Research and Trials Unit) is funded through a $40-million grant from CIHR with $40 million in matching grants and in-kind contributions from academic institutions, health authorities and other community partners. 

The BC SUPPORT Unit aims to foster patient-oriented research by engaging people with lived experience, which includes family members and caregivers, as research partners to guide every aspect of a study. Patient-oriented research engages patient partners from the onset—from identifying which issues to research, what questions to ask, who to ask them of, and how best to put results into practice more quickly to improve health care. It also builds multi-disciplinary teams that bring together people who provide health care, researchers and those who make decisions about health care services.

Three members of the research team will present at the Island Health Five Days in May event, “Sparking Conversations: Turning the Tide on the Opioid Crisis.” The event takes place on May 24 from 2 to 4:30 p.m. at UVic’s Hickman Building. To register for this free event, please contact research@islandhealth.ca.

Quotes from research partners:

David Castle, UVic Vice-President Research
“Patient-oriented research offers a tremendous opportunity to engage with the community in shaping projects that will have a vital and immediate impact. This type of research partnership aligns strongly with UVic’s commitment to community-engaged research. By working together, the university and local partners can identify research priorities and co-develop research projects, promote knowledge mobilization, improve health outcomes and benefit society.”

Cindy Trytten, Island Health Director of Research Capacity-Building
“We are excited to be a part of this dynamic collaboration, where the priorities of the research and its conduct are driven by people who have lived experience. This project has the potential to shape research and improve the health of people who use drugs across Canada.” 

Sharlene Law, Umbrella Society Executive Director
“Umbrella is pleased to provide a voice in this collaboration. Our participants provided an important perspective to this research, while enhancing their own learning. We are excited about the potential impact this research could have for individuals needing healthcare for their substance use.”

Alisa Harrison, Victoria Division of Family Practice, Executive Director
“The Victoria Division is honoured to participate in this work, which brings family physicians and primary care leaders into collaboration with other care providers, and people with lived experience. We are excited to help build a deeper understanding of cultural safety in order to improve people’s interactions with health services and enhance the way that physicians serve our community.”

Learn more about patient-oriented research on the BC SUPPORT website, http://bcsupportunit.ca/

Media contacts:
Karen Urbanoski (CARBC) at 250-853-3238 or urbanosk@uvic.ca
Bernie Pauly (CARBC) at 250-572-5915 or bpauly@uvic.ca
Jody Paterson (University Communications + Marketing) at 250-721-8746 or jodypaterson@uvic.ca, or 250-721-7636
Meribeth Burton (Island Health) at 250-519-1815 or meribeth.burton@islandhealth.ca