Research led by people who use drugs: centering the expertise of lived experience

Abstract

Background Research collaborations between people who use drugs (PWUD) and researchers are largely underutilized, despite the long history of successful, community-led harm reduction interventions and growing health disparities experienced by PWUD. PWUD play a critical role in identifying emerging issues in the drug market, as well as associated health behaviors and outcomes. As such, PWUD are well positioned to meaningfully participate in all aspects of the research process, including population of research questions, conceptualization of study design, and contextualization of findings. Main body We argue PWUD embody unparalleled and current insight to drug use behaviors, including understanding of novel synthetic drug bodies and the dynamics at play in the drug market; they also hold intimate and trusting relationships with other PWUD. This perfectly situates PWUD to collaborate with researchers in investigation of drug use behaviors and development of harm reduction interventions. While PWUD have a history of mistrust with the medical community, community-led harm reduction organizations have earned their trust and are uniquely poised to facilitate research projects. We offer the North Carolina Survivors Union as one such example, having successfully conducted a number of projects with reputable research institutions. We also detail the fallacy of meaningful engagement posed by traditional mechanisms of capturing community voice. As a counter, we detail the framework developed and implemented by the union in hopes it may serve as guidance for other community-led organizations. We also situate research as a mechanism to diversify the job opportunities available to PWUD and offer a real-time example of the integration of these principles into public policy and direct service provision. Conclusion In order to effectively mitigate the risks posed by the fluid and volatile drug market, research collaborations must empower PWUD to play meaningful roles in the entirety of the research process. Historically, the most effective harm reduction interventions have been born of the innovation and heart possessed by PWUD; during the current overdose crisis, there is no reason to believe they will not continue to be.

Employment Precarity and Increased Risk of Hazardous Occupational Exposures Among Residents of High Socioeconomic Hardship Neighborhoods

“…GLHW community and academic researchers examined census tract-level American Community Survey data on work characteristics (e.g. occupation and industry metrics, selected economic characteristics; American Community Survey Data - Employment Estimates 60623 , 2019 ) and community member expert knowledge ( Lewis and Hasking, 2019 ; Salazar et al , 2021 ) on their neighborhood to inform the development of a neighborhood map that depicts recruitment areas. A grid of 12 sections in Greater Lawndale was created and a purposive sample of survey participants from each geographic area was recruited to ensure that residents from all sections of the community would be represented in the final sample.…”

History and Future of Harm Reduction in North Carolina: Pragmatism and Innovation

“…In 2014, the drug user health organization led by Louise Vincent in Greensboro-the North Carolina Survivors Union (NCSU)-embarked on a cycle of rapid innovation centered on activism and care delivery by people directly affected by drug use [24,25]. By 2017, NCSU was among the first organizations in the nation to systematically use disposable test strips to identify fentanyl as it started to appear in the drug supply [26].…”

Complications in Using Real-World Data to Study the Health of People Who Use Drugs

“…[32][33][34] A promising approach gaining more attention is community-engaged and community-driven research. 35,36 Future research will have a greater public health reach when people with lived experience are directly involved in developing research questions, study procedures, and meaningful inclusion practices. 37,38 In real-world data studies, mixed methods studies can provide a much richer picture of the question at hand.…”