Guideline development in harm reduction: Considerations around the meaningful involvement of people who access services

Abstract

BackgroundHarm 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. MethodsWe 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. ResultsSix 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. ConclusionGuideline 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.