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

Date

2022

Authors

Pauly, Bernie
Sullivan, Ginger
Inglis, Dakota
Cameron, Fred
Phillips, Jack
Rosen, Conor
Bullock, Bill
Cartwright, Jennifer
Hainstock, Taylor
Trytten, Cindy

Journal Title

Journal ISSN

Volume Title

Publisher

Research Involvement and Engagement

Abstract

Background: Europe and North America are in the grips of a devastating overdose crisis. People who use substances often feel unsafe to access healthcare due to fears of stigma, blame, judgement, poor treatment, or other repercussions. As a result, they often avoid, delay, or leave care, resulting in premature death and missed opportunities for care. Internationally, there have been concerted efforts to move towards patient-engaged research to enhance the quality of health care systems and services. In Canada, the Canadian Institutes of Health Research (CIHR) Strategy for Patient- Oriented Research (SPOR) initiative promotes engagement of patients as active partners in health care research. As part of a community based patient oriented research project, we critically analyze the SPOR framework to provide insights into what constitutes safer research with people who use(d) substances. Methods: We undertook a two-stage process that began with a review of community based research principles and the SPOR framework. At the second stage, we undertook a qualitative descriptive study employing focus groups to generate description of the adequacy and appropriateness of the SPOR framework for guiding research with people who use(d) substances on four key dimensions (patient engagement, guiding principles, core areas of engagement and benefits). The data were analyzed using qualitative content analysis to identify key issues and insights. Results: While the SPOR framework includes a range of patient roles, principles and areas for engagement, there are issues and gaps related to essential elements of safe patient-oriented research for people who use substances. These include an individualized focus on patients as partners, lack of recognition of community benefits, power imbalances and distrust due to systemic stigma, engagement as one way capacity building and learning, and lack of accountability for taking action on research findings. Conclusions: Given the extent of stigma in health care and the ongoing illicit drug policy crisis, strategies for enhancing equitable Patient-Oriented Research (POR) include shifting language from patient partners to community researchers, recognizing power inequities and adding trust and equity as core POR principles including pay equity. Employing community based participatory research as a POR methodology allows the lead researchers to fully engage community throughout the research process, enhances community benefits and accountability for action. 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.

Description

Keywords

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

Citation

Pauly, B., Sullivan, G., Inglis, D., Cameron, F., Phillips, J., Rosen, C., . . . Urbanoski, K. (2022). “Applicability of a national strategy for patient-oriented research to people who use(d) substances: A Canadian experience.” Research Involvement and Engagement, 8(22). https://doi.org/10.1186/s40900-022-00351-z