Incorporating People with Lived Experience Into Research
For much of the past century, the public imagination has often reduced science to caricature: a solitary figure in a stained white lab coat, locked away in a laboratory, performing experiments for their own sake—like a character in a Bugs Bunny cartoon. This outdated stereotype suggests research as isolated, insular, and disconnected from the people it is meant to serve.
That model is not only inaccurate, but it is also insufficient.
Why People With Lived Experience Must Be Incorporated
Health research, particularly in fields such as chronic pain, cancer, and rare diseases, cannot succeed if it is designed exclusively by scientists working behind closed doors. Too often, the voices of those most directly affected, People with Lived Experience (PWLE), have been absent. Incorporating PWLE into research is not a symbolic gesture; it is a structural necessity that fundamentally alters the quality and relevance of scientific research.
PWLE bring expertise that no laboratory training can replicate:
- A practical understanding of what daily life with a condition entails.
- Insight into barriers to participation, such as fatigue, transportation, or insurance limitations.
- Clarity on which outcomes are most meaningful, including sleep, mobility, relationships, and quality of life, dimensions that are often overlooked by traditional study metrics.
The Role of Researchers’ Passion
Researchers dedicate years, and often entire careers, to their work. Their passion for discovery is profound. Yet for research to achieve its true potential, that passion cannot remain confined to academic journals or professional conferences. It must be shared with those most affected by the outcomes.
When researchers and PWLE collaborate, passion and lived experience converge. The result is science that is not abstract but tangible, not remote but relevant. This collaboration fosters better research questions, stronger designs, and more impactful results.
My Experience as a PWLE in Research
My own journey began in peer-led support groups, where I witnessed how individuals living with chronic pain could guide and strengthen one another. That foundation led me into formal research partnerships:
- Cedars-Sinai: I served as both a Patient Advisor and a Patient Advisory Board (PAB) member on a clinical trial studying doctor–patient communication. As a member of the PAB, I helped shape priorities and outcomes to ensure the research addressed real-world needs.
- PCORI (Patient-Centered Outcomes Research Institute): As a Merit Reviewer, I evaluated proposals to ensure patient engagement was substantive and not tokenistic. PWLE feedback directly influenced which studies were funded.
- UCSF: I was a facilitator on discussions with PWLE about their pain journey story. My voice was heard during discussions of future studies, as well as in planning, interviews, and analysis. My involvement extended beyond observation—I was part of shaping research directions.
- CDMRP (Congressionally Directed Medical Research Programs): As a Consumer Reviewer, I evaluated proposals funded by Congress, ensuring that both military and civilian perspectives were included in research priorities.
Each of these experiences reaffirmed the same principle: incorporating PWLE strengthens the science. When researchers share their passion with us, it fuels our determination to remain engaged, ask critical questions, and bring our lived realities into the process.
The Benefits of Incorporation
When PWLE are meaningfully incorporated into research teams:
- Study design improves, as research questions align with real patient priorities.
- Recruitment and retention increase, since participants see their realities reflected in the study.
- Results are more impactful, translating more effectively into clinical practice and daily life.
This incorporation also transforms culture. Researchers learn to see beyond the bench, while PWLE gain skills and confidence as partners. The research process evolves from hierarchy to collaboration, from isolation to shared responsibility.
The Future of Research
The outdated image of the “mad scientist” in isolation belongs in cartoons, not in modern health science. The future lies in research conducted through partnership, with scientists and PWLE working side by side. Incorporating lived experience into research is not an optional enhancement—it is the path to producing science that truly serves those it is intended to benefit.
Call to Action
If you are a researcher, consider opening your doors early and inviting PWLE into your projects. Budget time and resources for engagement and commit to shared decision-making.
If you are a PWLE, consider stepping into these opportunities. Your perspective is not supplementary; it is essential to the integrity and success of the research enterprise.
For those ready to act, here are established avenues to engage:
- PCORI – Engagement Resources and Foundational Expectations
Guidance for researchers and PWLE on how to collaborate meaningfully across all stages of research.
https://www.pcori.org/engagement-research/engagement-resources - CDMRP – Consumer Reviewer Opportunities
Patients, caregivers, and advocates serve as full voting members of review panels, ensuring funded studies reflect community priorities.
https://cdmrp.health.mil/cwg/role - UCSF – Community Engagement Toolkit
Practical tools and resources to support both researchers and PWLE in building effective community-engaged studies.
https://communityengagement.ucsf.edu/explore-our-toolkit
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).
Acknowledgment: Drafted with assistance from ChatGPT.