Applicability of a national strategy for patient-oriented research to people who use(d) substances: a Canadian experience

Abstract

Plain English Summary In Canada, one of the lessons being learned as we navigate the current dual public health crises (COVID-19 pandemic and illicit drug overdoses and deaths) is the extent to which substance use and access to services is highly stigmatized, especially when combined with poverty, homelessness and perpetuated by racism and other forms of discrimination. Stigma and lack of feeling safe in health care can result in avoidance, delays or leaving care early, resulting in premature death and lack of essential care. Internationally, there has been a push to improve health services by involving patients as active partners in the research process. Termed “patient-oriented research” (POR), Canada’s primary federal funding agency for health research (Canadian Institutes of Health Research, CIHR) created the Strategy for Patient-Oriented (SPOR) Initiative to guide and support researchers involved in POR projects. As part of a POR project, our research team examined the SPOR Framework to determine its value in guiding research with people who use substances. Our team included people with lived and living experiences of substance use, academic researchers, health service providers, and decision makers. Five focus groups were held to review the SPOR Patient Engagement Framework and discuss strategies for successful POR. We found numerous gaps related to important elements of POR with people who use substances including the need to move away from ‘us and them’ on research teams and shifting away from individuals to communities, build trust, explicitly attend to power inequities between research partners, and acting on findings. These insights provide recommendations for more equitable POR research with people who use substances.

Keywords

• Patient oriented research
• Public involvement
• Community based research
• Substance use
• Community engagement
• People who use drugs