Too often, including People With Lived Experience (PWLE) in research is treated as an afterthought, a checkbox, a token seat at the table. But if we’re serious about making health research more relevant, equitable, and practical, we need to build research teams that are fundamentally different.
Drawing from the Stanford Team Building Field Guide and PCORI Engagement Principles, this article outlines how to intentionally and effectively integrate PWLE into the core structure of a research team. This is not just inclusion—its team building at its best. It’s about forming partnerships where knowledge, experience, and decision-making are shared, and where everyone at the table is educated, prepared, and respected.
Why Focus on Team Building?
Teams don’t just happen—they’re built. According to Stanford, strong teams are designed, with attention to purpose, safety, structure, identity, and learning. If we don’t deliberately design the team to include PWLE in real and meaningful ways, the default is exclusion—even if PWLE are present.
PWLE bring a form of expertise that cannot be replicated in textbooks or lab reports. They know what it feels like to navigate broken systems, to endure symptoms, stigma, and side effects. Their experience—when treated as a core part of the team’s identity—can shape better questions, more grounded hypotheses, and more impactful outcomes.
PCORI reminds us: “Research is better when patients are engaged throughout.” But “engagement” alone isn’t enough. What we need is integration—where PWLE are part of the team’s foundation.
Step 1: Build Trust and Define Shared Purpose
The Stanford Field Guide emphasizes the need for psychological safety and a shared understanding of why the team exists. For PWLE, this means:
- Articulating a shared mission that connects everyone’s roles—including PWLE—with the study’s goals.
- Ensuring psychological safety, where PWLE feel secure sharing their ideas, experiences, and critiques without fear of being dismissed.
- Making the purpose of the research relevant to the daily lives and communities of those most affected.
🟢 PCORI Alignment: This supports the foundational principle of Reciprocal Relationships—engagement that is respectful, inclusive, and built on mutual benefit.
Step 2: Structure for Equity, Not Just Access
Good teams are organized around equity. That means we don’t just “invite” PWLE—we build systems that allow them to participate fully. This includes:
- Defining clear roles for PWLE in study design, decision-making, and evaluation.
- Ensuring fair compensation for time, expertise, and emotional labor.
- Providing accommodation for disabilities, caregiving responsibilities, or health conditions.
- Offer orientation and ongoing education so that PWLE understands research terms, timelines, and expectations and that researchers understand what PWLE brings.
🟢 PCORI Alignment: Reflects the principles of Equitable Partnerships and Co-learning, where all team members bring and gain knowledge.
Step 3: Foster a Sense of Belonging and Team Identity
Stanford urges teams to develop a shared identity—something beyond the task list. For integrating PWLE, this might mean:
- Creating inclusive rituals (e.g., opening each meeting with a brief personal check-in)
- Acknowledging lived experience as a credential, not an add-on
- Celebrating contributions from all team members, not just academic milestones
This is how we shift from “you’re included” to “you belong.”
🟢 PCORI Alignment: Supports Respect for Contributions, a core value that recognizes the expertise of all participants.
Step 4: Invest in Education and Co-Learning
The importance of mutual education cannot be overstated. One of the biggest reasons PWLE feel out of place on research teams is the lack of training—on both sides.
- Educate researchers on what patient-centeredness really means, and how to listen without defensiveness.
- Educate PWLE in research basics—protocols, consent, data privacy, comparative effectiveness—so they feel confident.
- Create a learning culture, where it’s okay to ask questions, admit gaps in understanding, and grow together.
🟢 PCORI Alignment: Fulfills the principle of Co-learning, where everyone benefits from each other’s expertise.
Step 5: Reflect, Adapt, and Stay Accountable
The Stanford Field Guide recommends regular reflection. For teams with PWLE, this means:
- Checking in on how engagement is going—not once, but regularly.
- Using anonymous tools to gather honest feedback.
- Making adjustments based on what PWLE say they need—not what the team assumes.
Evaluation shouldn’t just focus on data and outcomes. Evaluate the team itself.
🟢 PCORI Alignment: Aligns with Transparency, Honesty, and Trust, emphasizing shared accountability.
Final Thoughts: This Is Team Science—For Real
When PWLE are brought in at the beginning, treated as equals, supported with education, and woven into the team’s structure, the result isn’t just better engagement. It’s better science.
As someone who lives with chronic pain and has served on countless research teams and advisory boards, I’ve seen what happens when PWLE are brought in too late, without training, or just to check a box. And I’ve seen what happens when they’re truly part of the team from day one: stronger studies, smarter decisions, and more trust from the communities we aim to serve.
This isn’t about favors or optics. It’s about changing the way we do research—so that it serves the people it claims to represent.
Together, we will make the science better—and improve the lives of those who suffer.
Resources
- Stanford Team Building Field Guide
https://dschool.stanford.edu/resources/team-building-field-guide - PCORI Engagement Rubric
https://www.pcori.org/sites/default/files/Engagement-Rubric.pdf - PCORI Foundational Expectations for Partnerships in Research
https://www.pcori.org/research-results/about-our-research/research-partner-guidance
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).
With research and editing support from ChatGPT.