People with lived or living experience bring more than just powerful perspectives; they bring insight that can make research about our lives more ethical, relevant and effective. But hiring and working alongside us requires more than good intentions. It demands trust, flexibility and a willingness to share power.
In this article I share key lessons and practical tips for researchers studying issues affecting people who use drugs, drawn from my experience as a research assistant working through a lens of lived expertise. The process of hiring someone with lived or living experience shouldn’t start with a job posting. Instead, it should start with some hard questions: What kind of lived experience matters for this project? How will this person be supported? What does inclusion really look like on the team? Getting clear answers to these questions will help ensure the desired outcome isn’t just to hire someone, but to set them (and the research) up for success.
Build real trust, not tokenism
The first step to hiring with intention is being clear about what kind of lived experience is relevant to the research, and how to ask about it. For example, if the project focuses on improving care for people who use drugs, then the voices of people with first-hand experience of that reality are essential to include. But that doesn’t mean “drug use” itself should be listed as a job requirement. Instead, frame the posting in open-ended, respectful language that highlights the relevant experience, and circulate it through trusted community networks so the opportunity reaches people with the lived experience the role is meant to include.
Language also matters. Too often, people with lived or living experience are boxed into roles with the word peer attached: peer worker, peer researcher, peer advisor. While the intent may be to signal inclusion, these titles often have the opposite effect. They can diminish a person’s expertise and limit future opportunities. If the role involves conducting research, call the position research assistant. If it involves advising on methodology, call it project advisor. Titles should reflect the responsibilities of the role, not reduce someone to an identity.
Just as important as the hiring process is how people are treated once they join the team. Avoid micromanaging or making assumptions about reliability, and instead focus on fostering mutual respect and open communication from day one. Simple actions — like inviting the team member with lived expertise to lead part of a meeting, asking for their input on decisions beyond their personal experience or acknowledging their ideas publicly — can go a long way in showing they’re valued as a teammate, not just as someone who’s there to “represent” lived experience. And if there’s only one person with lived experience on the team, pause to ask: Is this an environment where they feel like a full member of the team, or are they being tokenized as the “lived experience voice”?
I know what it feels like to be that “token” person; the one brought in to represent a whole community, but never fully included. In those roles, I showed up and did my work, but without feeling genuinely valued, I couldn’t bring my full self to it. In my current role, being treated as an equal has changed everything. From being included at every stage of the research process, to knowing my voice is genuinely heard in meetings, that sense of respect makes me want to go above and beyond because I feel trusted, and I trust in return.
Be flexible and accommodating
Flexibility isn’t a perk; it’s a necessity for the meaningful inclusion of people with lived and living experience. Life doesn’t always fit neatly into a 9–5 schedule, especially for people managing health challenges, caregiving responsibilities, unstable housing or the added hurdle of navigating the unregulated drug supply. Offering flexible scheduling and making room for accommodations without stigma shows respect for the whole person. Requesting a different meeting time or a short break during heavy conversations isn’t a sign of unreliability; it’s actually a healthy and sustainable way to work. Ultimately, the key is a strong foundation of open communication that creates an environment where people feel comfortable asking for the flexibility and accommodations they need.
I know that I’ve been most productive on teams where flexibility wasn’t treated as a special favour, but as part of the culture. That trust allowed me to show up more consistently and give more of myself to the work.
Ask what support looks like for us
Support isn’t one-size-fits-all. Some people might need reminders about meeting times, while others find those unnecessary or even condescending. Practical things — like loaning out a laptop, covering transportation costs or providing a quiet space to work — can make the difference between struggling and thriving. The key is to ask what support looks like for each person, rather than assuming.
Early in one project, I was asked directly what would help me do my best work. That simple question meant a lot, and the adjustments we identified and made together, like ensuring I had the right equipment, made me feel set up for success.
Involve us early and meaningfully
Inclusion isn’t just about being hired; it’s about being part of the process from the beginning. People with lived experience should have input throughout a project, including during the creation of research questions, methods and tools. When our perspectives are sought early, research questions, data generation methods, recruitment plans, interview guides and consent forms become more relevant, respectful and effective. When our advice is not sought or is disregarded, our participation is reduced to tokenism.
On one project, I helped refine an interview guide. My ability to view the guide through a lens of lived experience led to questions being tweaked or changed altogether. It’s my belief that those alterations helped draw out richer, more detailed responses. It showed me first-hand how early involvement improves both the process and the data collected.
Expect — and welcome — learning curves
Research skills can be taught; lived experience cannot. Teams should expect questions, encourage learning and create opportunities for growth. Offering training or assigning responsibilities that align with someone’s longer term career goals shows they are valued as a professional, not just as a temporary hire. When people feel supported, they often exceed expectations.
Research team members who don’t share the lived experience of study participants should expect to hear — and welcome — perspectives that expand or challenge their own understanding. Researchers who welcome, rather than resist, new perspectives have an opportunity to grow in humility, empathy and cultural responsiveness. Genuine collaboration is reciprocal: just as communities benefit from research that is more relevant and respectful, researchers benefit from becoming more collaborative, thoughtful, accountable and attuned to the realities their work seeks to address.
I started in research with gaps in my technical skills, but I was eager to learn. With the right guidance, I not only caught on but grew into responsibilities I had never imagined I could take on. That training paid off not only for me but for the project as well.
Centre us in sharing the work
Too often, the voices of people with lived and living experience are left out of presentations and publications, even when they’ve contributed deeply. Inviting us to co-present or to be co-authors shifts power, adds authenticity and builds confidence. It signals that our insights matter as much in public as they do in team meetings.
Being invited to co-present at a conference showed me that my lived experience and my research skills were both valued. It made me proud to represent the team by presenting our findings.
Don’t forget the human side
Research that touches on trauma, poverty or drug use can be emotionally heavy. Building in trauma-informed practices — like check-ins after interviews, space to debrief, or simply starting meetings with “How are you?” instead of just “What are you working on?” — acknowledges the human side of the work. These practices don’t just help people with lived and living experience; they help support the whole team.
After one particularly tough interview with a research participant, having the chance to process with my team made all the difference. It reminded me that I wasn’t alone and that my well-being mattered as much as the data I was collecting.
The bottom line: more than just data
When people with lived and living experience are trusted, supported and treated as equals, the impact goes far beyond filling a role. The research itself changes. Questions get sharper, data get richer and the work becomes more ethical and relevant to the communities it’s meant to serve.
Hiring people with lived experience isn’t about token seats at the table; it’s about shifting how power is shared and what kinds of knowledge are valued. You’re not just adding a perspective; you’re transforming the whole conversation.
For me, being invited in as a real team member (not a checkbox) has been transformative. I’ve seen first-hand how research improves when lived and living experience is centred. More than that, I’ve felt what it’s like to be respected, supported and trusted in my role. And that has made me want to give my very best, not just for the project, but for the people the research is ultimately meant to serve.
Production of this article has been made possible through a financial contribution from Health Canada's Substance Use and Addictions Program. The views expressed herein do not necessarily represent the views of Health Canada.
About the author(s)
Val Fuhrmann, a research assistant at the Dalla Lana School of Public Health, University of Toronto, brings over two decades of harm reduction experience rooted in both professional expertise and lived experience of drug use and homelessness. She has worked across frontline settings and community-based research, helping bridge research and practice.