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

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.

Doing community-based research during dual public health emergencies (COVID and overdose)

“…Baumann et al [ 58 ] reported high motivation but low capability to undertake equity-oriented dissemination and implementation research. In a previous project engaging people who use drugs in patient-oriented research [ 59 ], we drew on cultural safety as an important concept for guiding safe research in the context of stigma related to drug use. We add to that in this paper and further draw attention to the need for greater attention to respectful and safer partnering with Indigenous people with lived/living expertise as well as sex, gender and geographic differences within a context of structural inequities.…”

“…Attention to structural inequities such as equitable pay is a key issue in community-based and patient-oriented research symbolizing respect for expertise [ 57 , 59 , 60 ]. Others have highlighted that peer work is often precarious with lack of regular employment and being paid below a living wage [ 61 , 62 ].…”

Commentary on Verdejo‐Garcia et al.: Cognitive training and remediation: identifying priorities for intervention research

“…Research guidelines and frameworks developed by and for people who use substances are available to promote more effective research partnerships at this early stage and may be particularly helpful, as other guidance materials can emphasize health‐care providers and decision‐makers rather than those with lived experience or the broader community [11]. Recently published key issues in the field further underscore the key importance of engagement from the very beginning of the research process in the substance use field [12].…”