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

Despite a long history of successful, community-led harm reduction programs and rising health inequalities suffered by PWUD, research collaborations between PWUD and researchers remain generally ignored. PWUDs are crucial in identifying developing concerns in the drug industry, as well as related health behaviors and consequences. PWUD are thus ideally positioned to contribute meaningfully to all parts of the research process, including the generation of research questions, the conceptualization of study design, and the contextualization of findings.

It is suggested that PWUD have unrivaled and up-to-date knowledge of drug use habits, including knowledge of novel synthetic drug bodies and drug market dynamics; they also have close and trustworthy connections with other PWUD. PWUD is in an ideal position to work with researchers in the study of drug use behaviors and the development of harm reduction treatments as a result of this. While PWUD have a history of mistrusting doctors, community-led harm reduction groups have won their trust and are ideally positioned to help research efforts.

The North Carolina Survivors Union is one such example, having completed several initiatives with respected research institutes with great success. The standard techniques were also discussed for capturing community voice's illusion of meaningful involvement. As a counterpoint, the union's structure was explained, which was designed and executed in the aim of serving as a model for future community-led organizations. Research was also positioned as a means of diversifying the career options accessible to PWUD and provided a real-world example of how these ideas may be integrated into public policy and direct service delivery.

Research collaborations must enable PWUD to play significant roles throughout the research process in order to successfully manage the risks posed by the fluid and volatile drug market. Historically, the most effective harm reduction programs have been born of PWUD's ingenuity and heart; there is no reason to assume this will not be the case during the present overdose epidemic. Given the growing rates of drug-related illness and mortality, it is high time for drug users to be included in public health initiatives. Our lives depend on it.

Citation
Salazar, Z.R., Vincent, L., Figgatt, M.C. et al. Research led by people who use drugs: centering the expertise of lived experience. Subst Abuse Treat Prev Policy 16, 70 (2021). https://doi.org/10.1186/s13011-021-00406-6
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