Working with, learning from and giving back: Principles for collaborative research with people who use drugs

‘Justice is not being invited to speak – but never truly heard… Justice is not seeing our names in reports – but never in budgets’ Anton Basenko, International Network of People who Use Drugs (INPUD) 1 The question is no longer whether to collaborate with people who use drugs, but how such collaboration can be ethically and sustainably enacted. Collaboration with people who use drugs in research is no longer a question of principle but of practice. Following Addiction’s 2017 editorial, “Why we should conduct research in collaboration with people who use alcohol and other drugs” 2, the field has made progress in recognising the expertise of lived and living experience. Yet, infrastructure to support best practice remains fragile and geographically uneven. I write as both a researcher and a community member, based in the UK, and offer examples from research practice to illustrate principles of collaboration within contexts of constraint. These principles intersect with those of co-production, which emphasise shared power, mutual decision-making and recognition of diverse expertise 3. Rather than a methodological model or distinct study component, the focus here is on working with people who use drugs, particularly those who are the most marginalised and criminalised. This spans all aspects of research involvement: from collaborative partnership through to study participant. The relationship between the researcher and the researched is not in and of itself empowering or liberating. It only becomes so when organized movements of the oppressed group play an active role in shaping and carrying out the research. Easily missed here, is reference to ‘organised movements’. In countries such as Australia and Canada, representative organisations of people who use drugs are supported by public health mandates tied to HIV and hepatitis C prevention funding, providing stability and enabling community leadership in research 8-10. This is, however, not universal. In the UK, an absence of comparable organisations means collaboration often relies on personal networks and project-specific arrangements, increasing vulnerability to tokenism. I draw on two current studies to illustrate the value and challenges of collaboration in practice (Boxes 1 and 2). Both were informed by earlier research that highlighted unmet community concerns. Tracing need identified in one study through to the collaborative planning and funding of another is, however, challenging in an institutional context that precludes research spend outside of grant cycles. iHOST (Improving Hospital Opioid Substitution Therapy) 12 was made possible through the strategic deployment of dissemination funds to workshop ‘solutions’ with participants and SIPP (Safe Inhalation Pipe Provision) 13, through the good will of community partners with whom I had built long-standing relationships. Transparency about the small chance of either of these projects being funded, and the limits of what might be possible within these projects, was crucial from the start. The iHOST team developed, piloted and evaluated an intervention aiming to improve hospital care for people who use opioids in England 12. Lived and living experience were represented (principal investigator, co-investigator and peer researcher, advisory members, peer expert group). Peer experts, advisors and research participants were reimbursed in cash. Building capacity: The peer expert group and researchers met quarterly in person from 2022 to 2026 to discuss study findings and co-produce a ‘cultural safety’ framework for in-patient care. Together we puzzled over how to encourage hospital staff to reflect on their positionality and practice in a non-confrontational way. By keeping this thread throughout, concepts employed became clearer and more relevant for the group. A peer noted: ‘just delving into that gives us more of a power, than available to us before’. Supporting living experience: Ensuring safety in spaces of collaboration is key for community with experience of trauma, and for the iHOST group this was facilitated both by the long-standing relationships held with each member and the shared acceptance of current drug use as expertise. Peers used to concealing their use or receiving judgement commented on how ‘freeing’ this was, with one noting that it had helped him disclose outside of the research setting. Translating results into action: Regular progress updates helped illustrate impact and value: ‘It's been amazing to see the changes over the period I have been involved … it makes you feel like it's been worthwhile … making real impact and real change’. The SIPP team developed, piloted and evaluated a crack inhalation equipment and workforce training intervention in England 13. Lived and living crack use experience was represented (principal investigator, co-investigators, advisory members, peer researchers). Peers and participants were reimbursed in cash. Equipment provision required police approvals, given its illegality in the UK. Managing expectation: The ethics of piloting a community-responsive intervention without the power to ensure continuation are fraught 11, and the co-development of an exit strategy was essential. Promotion materials made clear the finite duration of crack equipment supply. Flexibility and adaptation. The team navigated challenges when existing peer networks were not available as anticipated during research design. Ethics amendment requirements constrained responsive community mobilisation initiatives, leading instead to the development of smaller-scale peer researcher outreach models actionable within the time available. Capacitating lived expertise: Peer researchers received training and support to recruit, generate survey data and distribute SIPP kits. Their credibility and shared experience helped gain trust rapidly within community settings. As a peer noted: ‘Initially you get people saying “No, no, no … I'm not a crack user” … and then within two minutes people are telling us …’. Small to large change: Co-produced outputs included redesigned SIPP kits, responsive to participant practices and preferences. These and the study results were taken back to participants to demonstrate their value in informing change. As of writing, a governmental advisory body are reviewing the case for legislative change to enable provision at scale. Creating space for community-identified need to be voiced is not necessarily easy. Within a research project, a qualitative component helps. Here, issues outside the research remit can be important. The ability to hear these, and for them to be spoken, requires familiarity with the community and their trust. My background as a high-intensity drug user assists here—but is not requisite to good practice. I share a little of this history, however, as it informs my perspective. Maintaining an opioid habit in New Zealand in the 1990s was difficult. Drug scarcity required sustained effort and pharmaceutical ingenuity 14. Being followed in shops, shouted at in the street and treated with contempt in healthcare settings was common. When found in overdose, the response was cold shocks rather than ambulance alert, with the latter risking police involvement and incarceration. Contact with professionals could invite surveillance, judgement or arrest. If a researcher had approached me then, any disclosure would have been circumspect. Giving back extends beyond the dissemination of findings. Share results in accessible formats throughout the research process, and translate evidence into outputs with and for people who use drugs (Boxes 1 and 2). As community organisations emphasise, researchers should not disappear once data generation ends, but remain accountable for turning research into action 4, 5, 10. Despite growing rhetorical commitment to collaboration, structural barriers persist 6, 8. Funding cycles rarely support community engagement prior to grant award. Ethics committees may prohibit cash payments. Universities can exclude people with criminal records from employment. An absence of well-resourced community-led organisations amplifies vulnerability to tokenism. Opportunities for progression into secure roles remain limited for peer researchers, mirroring wider academic precarity but compounded by criminalisation and stigma. Addressing these constraints requires institutional change: dedicated funding for pre-award collaboration, ethical guidance aligned with community-authored charters, flexible recruitment policies, and sustainable pathways for community skill development and leadership opportunity. As a researcher but also a community member, I have found this difficult to write. The tensions are not easily resolved. The question posed—of ‘collaboration’—unintentionally reinforces an artificial binary. Many researchers have extensive drug-use experience, often unspoken within academia 19, while qualifications held by community members are seldom ascribed value in research settings 7. Demarcating a population by one marginalised practice can obscure heterogeneity and dehumanise 7. Principles evoke the rigidity of checkboxes, devoid of contextual nuance. Considering ‘best practice’ without challenge to the structural and political conditions that shape drug-related harms, feels disingenuous. Organisations of people who use drugs are as much constrained as enabled by the public health mandates that fund them, tied to narrow performance metrics and infectious disease prevention outcomes 20. A start, however, is to envision research with people who use drugs as working with, learning from and giving back. This is facilitated by structural support, but should not be dependent on it. Work with community to create knowledge that matters. Learn from the expertise that living experience confers. And give back through fair compensation, reciprocal capacity building and translation of evidence into meaningful practice. Finally, understand that for a socially devalued and criminalised population, misplaced trust can be dangerous and must be earned. Magdalena Harris: Writing—original draft (lead); writing—review and editing (lead). I would like to acknowledge the iHOST and SIPP peers without whom this work would not be possible. This editorial is dedicated to the memory of Peter Simonson, a dedicated iHOST peer expert group member, and friend. Magdalena Harris is funded by the National Institute for Health and Care Research (NIHR 133022, NIHR 133118). The views expressed are those of the author and not necessarily those of the NIHR or the Department of Health and Social Care. None. No data are available.