From Token to Partner: Reimagining Lived Experience Engagement in Research
When I joined the GALENOS project as a member of its Global Lived Experience Advisory Board (GLEAB) two years ago, I was filled with genuine enthusiasm. Here was an initiative that promised to make science accessible and inform better interventions through collaborative approaches. The prospect of bringing my lived experience of a mental health condition to a respected research team felt meaningful—a chance to bridge the gap between clinical knowledge and personal reality.
Today, I find myself reflecting on a journey that has been more instructive than I anticipated, though not in the ways I had hoped.
Beyond Tokenistic Consultation
Research funding bodies increasingly mandate lived experience involvement, recognizing that meaningful involvement enhances research quality, relevance, and impact. Yet as my experience demonstrates, there remains a troubling disconnect between stated values and implementation.
The GALENOS project began promisingly with six months of active engagement. Project coordinators involved us in comprehensive training about living systematic reviews (LSRs) and their methodology, as well as meaningfully including us in activities such as prioritizing research questions. This initial period felt genuinely collaborative and respectful of our expertise.
However, following this promising start, my engagement as an original member of one LSR became increasingly tokenistic. Over the subsequent 18 months, I was engaged for only a handful of hours. Communication gradually dwindled until it ceased entirely. When project leaders attempted to remedy this by including me in a second LSR, the result was a single 45-minute meeting with zero follow-up. While feedback I provided during these limited interactions was politely acknowledged, I have yet to see any evidence of how it shaped the projects on which I commented. What began as active, meaningful participation systematically eroded into tokenistic involvement—my presence acknowledged on paper, but my voice effectively silenced in practice.
Representational Role Ambiguity
One of the most challenging aspects of being a researcher with lived experience is the constant uncertainty about whether to speak from individual experience or attempt to represent broader community perspectives. This ambiguity, largely unaddressed in current frameworks, creates significant tension.
When I raised concerns at consecutive GLEAB meetings, each time receiving the response “we'll take that back and work on it” with no action following, I experienced firsthand the challenge of establishing and maintaining my voice within a research team. This systemic communication breakdown exposes a fundamental flaw in how lived experience advisors are integrated into research structures. We are often positioned adjacent to rather than within the core workflow, creating institutional barriers that prevent our insights from reaching decision-makers. These dynamics significantly impact how researchers with lived experience develop an understanding of their role over time.
Beyond Tokenism: What Meaningful Engagement Requires
For researchers genuinely interested in incorporating lived experience perspectives, my journey with GALENOS offers several lessons:
- Integration, not addition: Lived experience advisors shouldn't be add-ons to existing research structures but integrated into the core team. This means regular communication, meaningful tasks, and clear pathways for our insights.
- Accountability mechanisms: Projects need formal accountability structures for communication with experiential advisors. When I raised concerns, there was no mechanism to ensure they reached leadership or resulted in action.
- Equitable power dynamics: The patronizing response I received when escalating my concerns revealed uncomfortable truths about power imbalances. True co-production requires acknowledging and actively working to balance these dynamics.
- Emotional labour recognition: Being continuously sidelined while asked to document my “co-production experience” created a form of emotional labour rarely acknowledged in research contexts. This irony—being asked to reflect on participation while being excluded from it—adds insult to injury.
Moving Forward
I remain committed to democratizing research and acknowledging experiential knowledge as complementary to academic expertise. I also remain committed to the vision that initially drew me to GALENOS: making science accessible to inform better interventions and more collaborative treatment approaches. However, this commitment now comes with clearer boundaries and expectations.
I appreciated the opportunity to meet with the GALENOS Project Director recently and am pleased with the reception given to my experiences and commitment offered to repurposing lived experiences into change and action on research teams. This dialogue represents the kind of leadership engagement that can transform tokenistic involvement into genuine partnership.
For research teams planning to include people with lived experience, I offer this perspective: we join your projects with genuine enthusiasm and valuable insights. We invest emotional energy alongside our expertise. When that investment is unreciprocated, the damage extends beyond individual disappointment. It undermines trust in the entire enterprise of experiential collaboration.
The path forward requires humility from research leaders and persistence from experiential advisors. It demands structures that facilitate genuine inclusion rather than performative involvement. Most importantly, it requires recognition that the expertise that comes from lived experience deserves the same respect afforded to academic credentials.
The science will be better for it. The interventions will be more effective. And the collaborative relationships formed will transform not just research outputs but the process itself.
