Why Lived Experience Is Not a Buzzword in Clinical Research
- 1 day ago
- 3 min read
“Lived experience” has become a common phrase in healthcare and research conversations. It appears in conferences, grant proposals, and social media captions.
But the term is often misunderstood, and sometimes used incorrectly.
Lived experience isn't personal opinion. It's not a marketing phrase, and it isn't a symbolic gesture of inclusion.
At Kalo Clinical Research, lived experience is a critical part of responsible science.
What We Actually Mean by Lived Experience
Lived experience is the knowledge shaped by history, geography, culture, migration, family systems, and access to care.
It includes:
The environments in which a community’s ancestors lived
The diseases they were historically exposed to or shielded from
Patterns of colonization and displacement
Shifts in food systems and economic structures
Barriers to healthcare access
Generational experiences with the medical system
Lived experience is the context that makes science stronger.
It helps us understand how health patterns develop over time and why trust in research may vary across communities.
For example, many Pacific Islander communities lived for generations in geographically isolated island environments. Their exposure to certain infectious diseases, industrialized food systems, and environmental stressors was very different from that of populations on large continental landmasses.
When colonization, migration, and rapid environmental change introduced new diets, new diseases, and new economic pressures, health outcomes shifted quickly. Conditions such as diabetes and cardiovascular disease increased in ways that cannot be understood without historical context.
This is not about biology as destiny. It is about environment, adaptation, and systemic change across generations.
If research ignores that context, it risks drawing incomplete conclusions.
Why History Belongs in Modern Medicine
Clinical research often focuses on present-day measurements. Lab values. Endpoints. Statistical significance.
But health does not begin at enrollment.
Communities that were historically isolated may have experienced different disease exposures. Others have endured medical exploitation or exclusion. Many have faced structural barriers to preventive care.
These realities influence:
Baseline health conditions
Willingness to participate in research
Perceptions of safety
Communication preferences
Retention patterns within studies
When lived experience is excluded, science becomes narrower. When it is integrated, science becomes more precise.
The Risk of Using the Term Incorrectly
“Lived experience” should never be reduced to optics.
It doesn't mean placing one community member in a brochure
It doesn't mean assuming shared beliefs based on identity.
It doesn't mean speaking on behalf of a community without listening first.
True integration of lived experience requires humility. It requires asking better questions. It requires adjusting outreach, education, and engagement strategies in response to what communities actually express.
It requires recognizing that some communities’ voices have not always been included in the rooms where research decisions are made.
That absence has consequences.
If research priorities are shaped without those perspectives, gaps in safety, access, and trust can persist for generations.
Where This Shows Up in Our Work
At Kalo Clinical Research, understanding lived experience shapes how we provide access to studies in West Valley City and beyond.
It influences how we:
Explain study details in clear, respectful language
Create space for questions without pressure
Acknowledge historical mistrust openly
Partner with sponsors who value representative data
Build long-term relationships within Pacific Islander, Hispanic, and underserved communities
We listen before we lead.
When participants feel respected and informed, engagement becomes stronger. When communication reflects cultural understanding, retention improves. When sponsors collaborate with sites that understand community context, data quality benefits.
Listening is not separate from operational excellence. It strengthens it.
Lived Experience Strengthens Science
There is a misconception that prioritizing lived experience makes research less objective.
In reality, context improves rigor.
Cultural awareness improves communication.
Trust improves consistency.
Representation improves data relevance.
If treatments are intended to serve diverse populations, the research behind them must reflect diverse histories, environments, and realities.
That is not advocacy separate from science.
It is responsible science.
Moving Forward With Intention
As the clinical research industry evolves, integrating lived experience meaningfully will require more than updated language. It will require structural commitment.
It will require inviting communities whose voices have not always been included in the rooms where research decisions are made.
For us, this commitment is woven into our DNA. We believe research should reflect real lives, real histories, and real communities.
Because when medicine understands people more fully, it serves them more safely.
In gratitude, we thrive!
We'd love for you to join our research community. Help us bring more lived experience to making medicine made for all of us. Get Started
