What Living With Psoriasis Taught Me About Adherence—and Why Clinical Research Must Change

October 29 is World Psoriasis Day, a day that resonates with me—not just as a patient, but as someone working to contribute to how clinical research understands people with chronic disease.

I was diagnosed with psoriasis at 18 years old. It wasn’t the symptoms that hit hardest—it was the permanence. No cure. Just management. That word, management, has shaped so much of how I have come to understand adherence, both in my personal life and in my work at Cognivia. It taught me what adherence really means—not in theory, but in the messy, emotional reality of daily life.

Like many patients with chronic conditions, I began treatment with discipline. I applied the topical treatments exactly as instructed. But the results were underwhelming. Relief came and went. The side effects lingered. And within 48 hours, the symptoms returned. I wasn’t healing—I was chasing temporary comfort. And slowly, the effort began to feel heavier than the reward.

I didn’t stop because I didn’t care. I stopped because I was tired. Because the treatment disrupted my life more than the disease itself.

The Psychology Behind Adherence

Yet, in another part of my life, I showed up for exercise consistently. Why? Because the progress was visible. I felt stronger. It worked.

That contrast revealed something powerful: adherence isn’t about discipline—it’s about motivation, perceived benefit, and emotional state. The same person can be fully committed in one area and disengaged in another. That’s not failure. That’s psychology.

In clinical trials, nearly 30% of failures are due to non-adherence or early dropout.¹ Not because the drug doesn’t work—but because the patient doesn’t stay. And often, the reasons have nothing to do with efficacy or safety.

This philosophy resonates with me in my current position at Cognivia.We use behavioral science to predict how a patient might respond, not just physiologically, but from their behavior. We have built AI-driven models that incorporate personality traits such as optimism or anxiety, offering a bridge between each participant’s behavioral traits and how they would behave in clinical trials.

In retrospective analyses, adding behavioral predictors has significantly improved the ability to flag patients at high risk of disengagement early, giving sponsors a chance to intervene before dropout occurs. Intervention comes through 1:1 engagement with the trial sponsors and the patient. It's working individually to find ways to solve the factors that might be problematic, such as scheduling, transportation, work disruptions, and more.

My Personal Turning Point

When stress and anxiety worsened my symptoms, I turned to other therapies such as EMDR and hypnosis—not as alternatives, but as complements. My dermatologist wasn’t particularly supportive at the time, so I began exploring other avenues on my own. While seeing a psychologist for unrelated reasons, I noticed that simply talking through the sources of my stress and anxiety had a visible effect on my skin.

That realization pushed me to better understand the roots of my condition and take a more holistic, multidisciplinary approach to managing it. And the results were real. My plaques became less dry, less visible. The change wasn’t just physical—it was psychological. And it lasted longer than any treatment I had tried previously.

That experience changed how I see treatment. It’s not just about the drug. It’s about the person. The context. The mind.

Why Clinical Research Must Evolve

Too often, trials are designed around end points, retention rates, and statistical significance. But patients aren’t numbers. They’re people navigating unpredictable symptoms, busy lives, and complex emotions.

If we want real-world treatments to succeed, we must design trials that reflect real-world people.

If I could speak directly to researchers, I’d say: Don’t assume you know what benefit looks like for your patients. Ask them. Understand what they value. What they fear. What makes them feel understood or secure. Because quality of life and perceived benefit may not match what the researcher sees in a statistical end point. 

My Mission

For me, this work is personal. It’s how I contribute to a future where research doesn’t just chase data—it listens to patients. It understands them. And it builds something better.

Stephanie Alvarez is the marketing director of Cognivia.

Reference

1. Bell ML, Kenward MG, Fairclough DL, Horton NJ. Differential dropout and bias in randomised controlled trials: when it matters and when it may not. BMJ. 2013;346:e8668. doi: 10.1136/bmj.e8668