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.

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.