Seeing the Problem for What It Is
Over the years, I’ve seen plenty of examples where people like me were brought into research projects to check a box. We were there for appearances’ sake, not because our voices were wanted or needed. That’s tokenism. And it doesn’t just feel wrong—it weakens the research itself.
When patients are treated as ornaments instead of partners, the work loses the perspective of the very people it’s supposed to help.
Asking Straightforward Questions Early
When I’m invited to join a project, I don’t just nod and say yes. I ask questions right up front:
- What decisions will I be part of?
- How do you see me shaping the study?
- When in the process do you want my input?
If I don’t get clear answers, that tells me everything I need to know.
Making Sure It’s a Fair Exchange
I remind research teams that lived experience is expertise. That means:
- Compensation for my time.
- Authorship if my input shows up in the paper.
- A place in the meetings where choices get made.
I don’t ask for these things out of pride. I ask because if my role is respected, the work is stronger.
Building Real Connections
I’ve found that tokenism fades when people stop treating me as “the patient voice” and start seeing me as a teammate. I share my story, but I also listen to theirs. When we build trust both ways, real collaboration happens.
Whenever I can, I bring in other patients or caregivers. It’s harder to ignore or sideline lived experience when there’s more than one of us in the room.
Asking for Accountability
I push teams to use engagement frameworks—things like the PCORI Engagement Rubric or SPOR principles. These keep patient input from being an afterthought.
I also encourage teams to document how feedback from PWLE was used, and if it wasn’t, why. That’s how you tell the difference between lip service and real partnership.
Knowing When to Say No
Sometimes, despite best efforts, the role is still tokenistic. In those cases, I walk away. Staying on only makes the problem worse. Saying, “This isn’t a partnership. I can’t continue like this,” is a hard step, but sometimes the right one.
Strength in Numbers
I try to share what I’ve learned with others stepping into these roles. The more of us who know how to push back against tokenism, the harder it becomes for researchers to ignore our voices.
Final Thought
Tokenism is real, and I’ve faced it more than once. But I also know it can be challenged. By asking tough questions, setting boundaries, and demanding accountability, we make it clear that PWLE aren’t just there to fill a seat—we’re there to shape the work. That’s how research gets better.
Call to Action:
If you’re thinking about serving on a research team, don’t settle. Ask the questions. Claim your expertise. You belong at the center of the work, not on the sidelines.
Disclaimer: The views, positions, and recommendations expressed in this article are based on my personal experiences and independent research. They are solely my own and do not necessarily reflect the views, policies, or positions of the American Chronic Pain Association (ACPA).
Recognition: I want to recognize the people I work alongside in patient engagement—other PWLE, caregivers, advocates, and researchers who continue to show me that real partnership is possible. I also acknowledge the assistance of ChatGPT in drafting this article.