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

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.

Defining culturally safe primary care for people who use substances: a participatory concept mapping study.

BACKGROUND: People who use substances experience high levels of substance-related stigma, both within and outside of health care settings, which can prevent people from help-seeking and contribute further to health inequities. Recognizing and respecting how political, social, economic, and historical conditions influence health and health care, cultural safety, with origins in addressing Indigenous racism, is a potential strategy for mitigating stigma and marginalization in health care. Using a participatory research approach, we applied the concept of cultural safety to develop a model of safe primary care from the perspective of people who use substances. METHODS: People who use or used substances were involved in all phases of the research and led data collection. Study participants (n = 75) were 42.5 years old on average; half identified as female and one quarter as Indigenous. All were currently using or had previous experience with substances (alcohol and/or other drugs) and were recruited through two local peer-run support agencies. Concept mapping with hierarchical cluster analysis was used to develop the model of safe primary care, with data collected over three rounds of focus groups. RESULTS: Participants identified 73 unique statements to complete the focus prompt: "I would feel safe going to the doctor if …" The final model consisted of 8 clusters that cover a wide range of topics, from being treated with respect and not being red-flagged for substance use, to preserving confidentiality, advocacy for good care and systems change, and appropriate accommodations for anxiety and the effects of poverty and criminalization. CONCLUSIONS: Developing a definition of safe care (from the patient perspective) is the necessary first step in creating space for positive interactions and, in turn, improve care processes. This model provides numerous concrete suggestions for providers, as well as serving as starting point for the development of interventions designed to foster system change.

Health equity-oriented approaches to inform responses to opioid overdoses: a scoping review protocol.

REVIEW QUESTION/OBJECTIVES: The purpose of this scoping review is to systematically identify and describe literature that uses a health equity-oriented (HEO) approach for preventing and reducing the harms of stigma or overdose for people who use illicit drugs or misuse prescription opioids.The question of the review is: What is currently known about the use of an HEO approach for preventing the harms of stigma or overdose when people use illicit or street drugs, or use prescription opioids for other than their intended purposes?Specifically, the review objectives are.

Performance Measurement in Mental Health and Addictions Systems: A Scoping Review.

OBJECTIVE: The purpose of this study was to evaluate how performance is defined, conceptualized, and measured in mental health and addiction service systems around the world. METHOD: We conducted a systematic scoping review of English-language scientific and gray literature published from 2005 to 2015. Eligible documents (n = 222) described performance measurement systems and outlined the theory or empirical evidence for indicators. We used a structured approach for data extraction and descriptive and thematic analysis, supplemented with stakeholder consultation. RESULTS: We identified seven themes in the literature: similarity in performance domains across frameworks; the ability of frameworks to inform care quality at client, program/facility, and system levels; the predominance of indicators of process and outcome, over structure; the lack of evidence on the links between domains and/or indicators; common, but limited, evaluation of family/caregiver involvement; equity as a cross-cutting domain of performance; and limited attention to performance measurement in peer support services. CONCLUSIONS: The literature on performance measurement in mental health and addictions services is vast, and a wide variety of indicators is available to those designing a measurement system. Evaluations of commonly used performance indicators have yielded mixed evidence on their ability to discriminate high- and low-performing service providers, and their sensitivity to changes in policies and practices. As performance measurement efforts grow in scope and complexity, work will be needed to ensure that indicators are fair, appropriate, and suited to support quality improvement in services of different types.

A system-level study of initiation, engagement, and equity in outpatient substance use treatment.

Understanding the nature of variations in the quality of substance use treatment is critical to ensuring equity in service delivery and maximizing treatment effectiveness. We used adapted versions of the US Healthcare Effectiveness Data and Information Set (HEDIS) treatment initiation and engagement measures to assess care quality in specialized outpatient services for substance use in Ontario, Canada. Using administrative data, we calculated rates of outpatient treatment initiation and engagement (N = 120,394 episodes) and investigated variation by client characteristics and treatment mandates. About half of clients who entered outpatient treatment met the criteria for initiation (i.e., had a second visit within 14 days) and 30% met the criteria for engagement (i.e., had another two visits within 30 days of initiation). The likelihood of treatment initiation and engagement was greater among older people, those with more education, those who were not mandated to enter treatment, and those with greater substance use at admission. People who entered treatment for cannabis were less likely to engage. Engagement was less likely among men than women, but gender differences were slight overall. This study demonstrates the feasibility of using adapted versions of two common measures to characterise care quality in substance use treatment services in the Canadian context. Overall, the magnitude of associations with client characteristics were quite small, suggesting that initiation and engagement were not overly localized to specific client subgroups. Findings suggest that the Ontario system has difficulty retaining clients who enter treatment and that most outpatient treatment involves care episodes of limited duration.

Service Use and Unmet Needs for Substance Use and Mental Disorders in Canada.

OBJECTIVE: To investigate patterns and predictors of help seeking and met/unmet needs for mental health care in a national population health survey. METHOD: Participants were respondents to the 2012 Canadian Community Health Survey on Mental Health (CCHS-MH; n = 25,133). We used regression to identify the diagnostic and sociodemographic predictors of the use of informal supports, primary care, and specialist care, as well as perceived unmet needs. RESULTS: Eleven percent of Canadians reported using professionally led services for mental health or substance use in 2012, while another 9% received informal supports. Two-thirds of people with substance use disorders did not receive any care, and among those who did, informal supports were most common. Seventy-four percent of people with mood/anxiety disorders and 88% of those with co-occurring disorders did access services, most commonly specialist mental health care. Men, older people, members of ethnocultural minorities, those not born in Canada, those with lower education, and those with higher incomes were less likely to receive care. Unmet needs were higher among people with substance use disorders. CONCLUSIONS: Gaps in services continue to exist for some potentially vulnerable population subgroups. Policy and practice solutions are needed to address these unmet needs. In particular, the convergence of research pointing to gaps in the availability and accessibility of high-quality services for substance use in Canada demands attention.