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Background: Harm reduction seeks to minimizes the negative effects of drug use while respecting the rights of people with lived and living experience of substance use (PWLLE). Guideline standards (“guidelines for guidelines”) provide direction on developing healthcare guidelines. To identify essential considerations for guideline development within harm reduction, we examined whether guideline standards are consistent with a harm reduction approach in their recommendations on involving people who access services. Methods: We searched the literature from 2011–2021 to identify guideline standards used in harm reduction and publications on involving PWLLE in developing harm reduction services. We used thematic analysis to compare their guidance on involving people who access services. Findings were validated with two organizations of PWLLE. Results: Six guideline standards and 18 publications met inclusion criteria. We identified three themes related to involving people who access services: Reasons for Involvement, Methods of Involvement, and Factors in Success. Subthemes varied across the literature. We identified five essential considerations for guideline development in harm reduction: establishing a shared understanding of reasons for involving PWLLE; respecting their expertise; partnering with PWLLE to ensure appropriate engagement; incorporating perspectives of populations disproportionately affected by substance use; and securing resources. Conclusion: Guideline standards and the harm reduction literature approach the involvement of people who access services from different perspectives. Thoughtful integration of the two paradigms can improve guidelines while empowering PWLLE. Our findings can support the development of high-quality guidelines that align with the fundamental principles of harm reduction in their involvement of PWLLE.

Abstract Background The Peer Engagement and Evaluation Project (PEEP) aimed to engage, inspire, and learn from peer leaders who represented voices of people who use or have used illicit substances, through active membership on the ‘Peeps’ research team. Given the lack of critical reflection in the literature about the process of engaging people who have used illicit substances in participatory and community-based research processes, we provide a detailed description of how one project, PEEP, engaged peers in a province-wide research project. Methods By applying the Peer Engagement Process Evaluation Framework, we critically analyze the intentions, strategies employed, and outcomes of the process utilized in the PEEP project and discuss the implications for capacity building and empowerment among the peer researchers. This process included: the formation of the PEEP team; capacity building; peer-facilitated data collection; collaborative data analysis; and, strengths-based approach to outputs. Results Several lessons were learned from applying the Peer Engagement Process Evaluation Framework to the PEEP process. These lessons fall into themes of: recruiting and hiring; fair compensation; role and project expectations; communication; connection and collaboration; mentorship; and peer-facilitated research. Conclusion This project offers a unique approach to engaging people who use illicit substances and demonstrates how participation is an important endeavor that improves the relevance, capacity, and quality of research. Lessons learned in this project can be applied to future community-based research with people who use illicit substances or other marginalized groups and/or participatory settings.

Abstract Background People who use drugs have a significantly higher prevalence of chronic non-cancer pain compared to the general population, yet little is known about how various policy, economic, physical, and social environments may serve as risk or protective factors in the context of concurrent pain and substance use. Therefore, this study sought to explore perspectives, risks, and harms associated with pain among people who use drugs. Methods Thirteen focus group interviews were held across British Columbia, Canada, from July to September 2015. In total, 83 people who had lived experience with substance use participated in the study. Using an interpretive description approach, themes were conceptualized according to the Rhodes’ Risk Environment and patient-centered care frameworks. Results Participants described how their experiences with inadequately managed pain in various policy, economic, physical, and social environments reinforced marginalization, such as restrictive policies, economic vulnerability, lack of access to socio-physical support systems, stigma from health professionals, and denial of pain medication leading to risky self-medication. Principles of patient-centered care were often not upheld, from a lack of recognition of patients as experts in understanding their unique pain needs and experiences, to an absence of shared power and decision-making, which often resulted in distrust of the patient-provider relationship. Conclusions Various risk environments and non-patient-centered interactions may contribute to an array of health and social harms in the context of inadequately managed pain among people who use drugs.

Abstract Background Over the past several decades, there have been numerous peer-reviewed articles written about people who use drugs (PWUDs) from the Downtown Eastside neighborhood of Vancouver, Canada. While individual researchers have engaged and acknowledged this population as participants and community partners in their work, there has been comparatively little attention given to the role of PWUDs and drug user organizations in directing, influencing, and shaping research agendas. Methods In this community-driven research, we examine 20 years of peer-reviewed studies, university theses, books, and reports that have been directed, influenced, and shaped by members of the activist organization the Vancouver Area Network of Drug Users (VANDU). In this paper, we have summarized VANDU’s work based on different themes from each article. Results After applying the inclusion criteria to over 400 articles, 59 items containing peer-reviewed studies, books, and reports were included and three themes of topics researched or discussed were identified. Theme 1: ‘health needs’ of marginalized groups was found in 39% of articles, Theme 2: ‘evaluation of projects’ related to harm reduction in 19%, and Theme 3: ‘activism’ related work in 42%. Ninety-four percent of co-authors were from British Columbia and 44% of research was qualitative. Works that have been co-authored by VANDU’s members or acknowledged their participations created 628 citations. Moreover, their work has been accessed more than 149,600 times. Conclusions Peer-based, democratic harm reduction organizations are important partners in facilitating groundbreaking health and social research, and through research can advocate for the improved health and wellbeing of PWUDs and other marginalized groups in their community. This article also recommends that PWUDs should be more respectfully engaged and given appropriate credit for their contributions.

Abstract Background Engaging people with drug use experience, or ‘peers,’ in decision-making helps to ensure harm reduction services reflect current need. There is little published on the implementation, evaluation, and effectiveness of meaningful peer engagement. This paper aims to describe and evaluate peer engagement in British Columbia from 2010–2014. Methods A process evaluation framework specific to peer engagement was developed and used to assess progress made, lessons learned, and future opportunities under four domains: supportive environment, equitable participation, capacity building and empowerment, and improved programming and policy. The evaluation was conducted by reviewing primary and secondary qualitative data including focus groups, formal documents, and meeting minutes. Results Peer engagement was an iterative process that increased and improved over time as a consequence of reflexive learning. Practical ways to develop trust, redress power imbalances, and improve relationships were crosscutting themes. Lack of support, coordination, and building on existing capacity were factors that could undermine peer engagement. Peers involved across the province reviewed and provided feedback on these results. Conclusion Recommendations from this evaluation can be applied to other peer engagement initiatives in decision-making settings to improve relationships between peers and professionals and to ensure programs and policies are relevant and equitable.