Living with chronic kidney disease (CKD) can sometimes feel like everything revolves around lab numbers, medications, and appointments. But what if kidney care focused just as much on you — your goals, your quality of life, and your ability to participate fully in life?

In an interview with Nephrology Times, Kevin Fowler, founder and principal of The Voice of the Patient, a patient advocacy and engagement consultancy that works with life sciences organizations across the spectrum of kidney diseases, shares his perspective on patient activation, quality of life, and what it really means to center the patient in kidney care.*

Kevin is a long-time kidney transplant recipient and believes patient activation is one of the most powerful tools in kidney care.

And his story proves it.

(See video here)

What Is “Patient Activation”?

Patient activation means believing that you have the skills, knowledge, and confidence to work alongside your healthcare team to manage your kidney disease.

Kevin received a preemptive kidney transplant in 2004, meaning he received a transplant before needing dialysis. He credits part of his long-term success to being actively involved in his care early on.

To him, activation isn’t about replacing your doctor. It’s about partnership.

When patients are activated:

• They ask questions.
• They understand their treatment options.
• They take steps outside the clinic to support their health.
• They feel more in control of their journey.

And that can change outcomes.

Beyond Medications: The Bigger Picture of Treatment

Kidney treatment isn’t just dialysis or transplant.

Kevin emphasizes that true treatment includes:

• Exercise
• Cardiovascular health
• Mental resilience
• Nutrition
• Emotional wellbeing

He shared how his nephrologist acted like a coach — preparing him early for transplant, encouraging exercise, and reducing heart risk. That guidance gave him a sense of agency long before transplant happened.

Care doesn’t stop when you leave the doctor’s office. In many ways, that’s when it begins.

The Mental Health Side of Kidney Disease

One area Kevin wishes had been discussed more openly was mental health — especially after transplant.

After surgery, he experienced unexpected depression related to medications.

This highlights something important: kidney disease treatment isn’t just physical.

Patients deserve honest conversations about:

• Emotional ups and downs
• Medication side effects
• Mental health support
• What life may look like after major treatment changes

Preparing patients doesn’t frighten them — it empowers them.

Kidney Disease and Life Goals

Kevin also challenges us to rethink how we define “treatment success.”

For him, receiving a preemptive transplant allowed him to continue working, support his family, pay for his children’s college education, and maintain economic stability.

He openly acknowledges that fewer than 3% of patients receive a preemptive transplant. Many people face dialysis first, followed by job disruption and financial strain.

Where Kidney Care Is Headed

Kevin believes nephrology is at a turning point.

With earlier detection, new medications, and evolving kidney health policies, there is an opportunity to:

• Slow disease progression
• Preserve kidney function longer
• Improve quality of life
• Expand transplant access
• Address disparities in rural, Black, and Hispanic communities

The goal should shift from managing kidney failure to protecting kidney health.

What This Means for You

If you’re living with CKD, consider asking yourself:

• Do I understand my treatment options?
• Have I talked with my doctor about my life goals?
• Do I feel comfortable asking questions?
• Am I addressing exercise, nutrition, and mental health alongside medical care?

You deserve to be at the center of your care.

Kidney disease may be part of your story — but it should not define your future.

*Nephrology Times. (February 6, 2026). “Centering the Patient in Kidney Disease” docwirenews.com

The information provided by Responsum Health is for educational purposes only and does not replace professional medical advice. Always talk with your healthcare provider before making changes to your treatment or care. Responsum Health does not endorse specific treatments, providers, or products.