The Impact of Research Driven, Led, Instigated, or Facilitated by Organizations and Networks Established by and for People Who Use Drugs: From Regional to International Scales

Dear Colleagues,

Although a significant body of literature has examined ‘peer’ or service user involvement in harm reduction and substance use research, policy and practice, with few notable exceptions, the emergent, interdisciplinary field of critical drug studies has been particularly remiss in examining groups, organizations and/or networks established by and for people who use drugs (PUD—henceforth referred to as ‘user groups’). This is particularly surprising given that in order to meet their needs in the absence of state support, the earliest forms of organizing and activism among PUD began in the Netherlands nearly 40 years ago. Over the past few decades, however, user groups have proliferated to such an extent that they can now be found in almost every corner of the world and at virtually every conceivable scale, from local/regional, to national, to international contexts. Above and beyond countless other initiatives rooted in education and training, mutual support and harm reduction, however, such groups have been directly involved in both active and passive forms of research and development. While in the past, research about PUD has been wielded as a tool of oppression and exploitation, user groups have more recently adopted a decidedly more active role in the research process by placing an emphasis on research with and for PUD, consciously engaging in different forms of self-representation. As autonomous researchers, PUD have served—and continue to serve—in a number of different capacities to advise and/or consult with national governments and international institutions such as the United Nations Office on Drugs and Crime (UNODC) and/or the World Health Organization (WHO)^[1]. Soliciting responses from a diverse range of stakeholders, the theme of this Special Issue thus asks: What is the impact of research driven, led, or instigated by organizations and networks established by and for people who use drugs?

Focus

This special issue is focussed on the relatively recent emergence of organizations and networks established by and for people who use drugs since the very first ‘Junkie Union’ (Junkiebunden) was formed in the Netherlands in the mid 1980s. Largely owing to the work of groups such as the International Network of People who use Drugs (INPUD), user groups have emerged in virtually every region of the world, and have engaged in a wide range of individual and collaborative projects, from attempting to build capacity and inspire the formation of user groups in other regions, to serving as consultants in the development of drug policies and school-based educational curriculum, to engaging in peer-based education regarding safer injection and overdose prevention with the use of naloxone, to unsanctioned, direct action tactics that have effectively drew attention to glaring gaps in harm reduction programming.

Scope:

This Special Issue will attempt to solicit high-quality, critical content from academics, as well as PUD organizers and activists. As the Special Issue will be specifically focused on how organizations and networks established by and for people who use drugs relate to the notion of research—both as a weapon of oppression and exploitation, and a vehicle for liberation, self-representation and emancipation—the Guest Editor(s) will make evert effort to solicit contributions from a diverse range of different groups and individuals on a wide variety of relevant topics and issues.

Purpose:

Drawing from recent changes to research ethics protocols inspired by the 94 ‘Calls to Action’ contained in the Final Report of the Canadian Truth and Reconciliation Commission (TRC)—an inquiry into the traumatic, intergenerational impacts of Canada’s ‘Residential School’ system on Indigenous peoples—Cunningham and Mercury (2023) make overt reference to the ‘participatory turn’ in social research, a notion with obvious relevance to user groups. Therefore, the overall purpose of this Special Issue is to increase awareness regarding the role and importance of organizations established by and for people who use drugs (PUD) in relation to research and knowledge production (with a particular emphasis on the inimitable nature of lived experience and/or experiential knowledge).

As I am currently in the midst of conducting a formal scoping review on this very topic, I can say with certainty that there is a VERY small and limited body of scholarly literature regarding organizing and activism on the part of people who use drugs (PUD), and even less published research that explicitly addresses the role and importance of organizations established by and for PUD in the research process. Despite the fact that very little scholarly attention has been devoted to research concerning PUD, however, there is a significant body of scholarly literature concerning various factions or orientations of mental health service user activism (i.e., from ‘consumer survivors’ to ‘mad studies’). Having said that, owing largely to the significant number of fatalities associated with the toxic drug poisoning epidemic that has gripped North America since approximately 2016, organizations established by and for people who use drugs are finally beginning to receive some degree of interest and attention from academic researchers. In response to this increase in attention, user groups such as the Vancouver Area Network of Drug Users’ or VANDU have grown increasingly militant regarding their expectations of outside research, and the conduct of academic researchers. VANDU’s Research and Drug User Liberation (n.d.) manifesto, for example, opens with the assertion that ‘[t]he drug war didn’t start because of a lack of research or ‘bad’ research and we don’t think it will end because of ‘good’ research,’ (para. 1). Researchers should ‘leave the organizations of oppressed people that they work with stronger than when they came in’, VANDU (n.d.) continues: ‘if they don’t they are part of the problem and not part of the solution,’ (para. 3). I have included a brief list of what are perhaps the most relevant and most widely consulted resources—produced by academics and user groups alike—below in order to help better situate the relationship between research and organizations established by and for people who use drugs.

References

Australian Injecting & Illicit Drug Users League (AIVL, 2002) National statement on ethical issues for research involving injecting/illicit drug users. https://aivl.org.au/aivl-2003-national-statement-on-ethical-issues-for-research-involving-injecting-illicit-drug-users/.

Brown, G., Crawford, S., Perry, G., Byrne, J., Dunne, J. H., Reeders, D., Corry, A., Dicka, J., Morgan, H., & Jones, S. (2019). Achieving meaningful participation of people who use drugs and their peer organizations in a strategic research partnership. Harm Reduction Journal, 16(1). https://doi.org/10.1186/s12954-019-0306-6.

Cunningham, C., & Mercury, M. (2023). Coproducing health research with Indigenous peoples. Nature medicine, 29(11), 2722–2730. https://doi.org/10.1038/s41591-023-02588-x.

Damon, W., Callon, C., Wiebe, L., Small, W., Kerr, T., & McNeil, R. (2017). Community-based participatory research in a heavily researched inner city neighbourhood: Perspectives of people who use drugs on their experiences as peer researchers. Social science & medicine (1982), 176, 85–92. https://doi.org/10.1016/j.socscimed.2017.01.027.

Ross, A., Potter, G. R., Barratt, M. J., & Aldridge, J. (2020). “Coming out”: Stigma, reflexivity and the drug researcher’s drug use. Contemporary Drug Problems, 47(4), 268–285. https://doi.org/10.1177/0091450920953635.

Salazar, Z., Vincent, L., Figgatt, M., Gilbert, M., & Dasgupta, N. (2021). Research led by people who use drugs: centering the expertise of lived experience. Substance Abuse Treatment, Prevention, and Policy, 16(1). https://doi.org/10.1186/s13011-021-00406-6.

Simon, C., Brothers, S., Strichartz, K., Coulter, A., Voyles, N., Herdlein, A., & Vincent, L. (2021). We are the researched, the researchers, and the discounted: The experiences of drug user activists as researchers. International Journal of Drug Policy, 98, 103364. https://doi.org/10.1016/j.drugpo.2021.103364.

Souleymanov, R., Kuzmanović, D., Marshall, Z., Scheim, A. I., Mikiki, M., Worthington, C., & Millson, M. P. (2016). The ethics of community-based research with people who use drugs: results of a scoping review. BMC Medical Ethics, 17(1). https://doi.org/10.1186/s12910-016-0108-2.

Vancouver Area Network of Drug Users. (VANDU, n.d.). Research and Drug User Liberation. https://vandureplace.wordpress.com/research/.

Vancouver Area Network of Drug Users. (VANDU, 2010). VANDU Manifesto for a Drug User Liberation Movement. https://vandu.org/wp-content/uploads/2014/03/VANDU-manifesto-july-2010.doc.

Walker, M., Beadman, K., Griffin, S., Beadman, M., & Treloar, C. (2019). Involving peers in research: the UNSW community reference panel. Harm Reduction Journal, 16(1). https://doi.org/10.1186/s12954-019-0325-3.

Contributions have to follow one of the three categories of papers (article, conceptual paper or review) of the journal and address the topic of the Special Issue.

[1] SEE: https://www.who.int/publications/i/item/9789240053274.

Dr. Christopher B. R. Smith
Guest Editor

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• harm reduction
• critical drug studies
• research capacity by and for
• peer-based
• user-driven
• people who use drugs