We are the researched, the researchers, and the discounted: The experiences of drug user activists as researchers

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

“…In fact, advisory boards can cause more harm than good, furthering the divide between PWUD and researchers. With this considered, NCSU has installed processes, largely informed by the principles of community driven research (CDR) [7], to avoid such experiences. Research collaborations begin with an informal meeting between NCSU and researchers to discuss objectives, methods, findings dissemination, party responsibilities, and other logistics.…”

How the war on drugs impacts social determinants of health beyond the criminal legal system

“…Finally, healthcare providers can get involved with policy-level changes to end drug testing, mandatory reporting, zero-tolerance policies, coerced treatment, and denial of services and resources based on arrest or conviction records at the municipal, state, and federal levels. Providers can follow the leadership and expertise of people who use drugs, some of whom have organised themselves into user unions [ 153 ]. Policy advocacy can include drafting and joining sign-on letters, delivering expert testimony, speaking to media, writing op-eds, and lobbying medical professional organisations to release policy statements.…”

“Nothing about us, without us”: Negotiating the personal and professional as activists and academics who use drugs

“…The resultant inability to "belong to multiple categories at once" (see Souleymanov et al, 2016) automatically places USU members, some possessing graduate degrees or in the process of acquiring them, on the bottom of the researcher-subject hierarchy, which is internalized by all. Damning is the lament, "they appeared uninterested in what we had to say or our research questions ...These researchers did not seem to want what we envisioned: a true collaboration where their infrastructure worked hand in hand with our unique insight"' (Simon et al, 2021). In detailing these tensions and power imbalances, including within community based participatory research (CBPR) projects, Simon et al call for a new paradigm of community driven research (CDR) and provide recommendations for its instigation.…”

“…It reminded every single member that their voices matter and their stories and experiences have value. (Simon et al, 2021) Community driven research can empower people who use drugs because the questions formulated matter to the community and arise out of their collective knowledge and experience. Simon et al's quote above, on the importance of being heard and having community stories valued, resonates with the introductory quote to this editorial: "We need to tell our own stories.…”