Before my knee replacement surgery this summer, my orthopedic surgeon asked me a question I wasn’t necessarily expecting.

“What does success look like for you?”

It was a simple question, but one that I appreciated.

For me, success meant being able to hike, travel, and maintain my independence. I wanted to get back to doing the things I love without my knee limiting what I could do.

My surgeon had his own measures of success, of course. He wanted the surgery to go well, the new joint to function properly, and my recovery to progress as expected. But he also wanted to understand what a successful outcome would mean to me.

I suspect he was also making sure my expectations were realistic. After all, if I’d told him my goal was to run a marathon on every continent, we might have needed a different conversation! (For the record, that has never been on my bucket list.)

But I walked away from that appointment feeling that he understood what mattered to me.

And that got me thinking about something I believe strongly, both as a patient and as a patient research advocate.

Good healthcare isn’t just about treating a condition. It’s about caring for the person living with it.

 

Patients Know Their Own Bodies

We often encourage people to pay attention to their bodies. If something doesn’t feel right, talk to your doctor. Don’t ignore unusual symptoms. Speak up when something changes.

That’s good advice. But what happens when someone does speak up and doesn’t feel heard?

Patients may not know what’s causing their symptoms, but they often recognize when something isn’t normal for them.

Consider the growing number of younger adults being diagnosed with colorectal cancer. Routine screening for people at average risk generally begins at age 45. But cancer doesn’t wait for someone to reach a screening milestone.

A younger person experiencing persistent changes in bowel habits, unexplained bleeding, or other concerning symptoms deserves a thoughtful evaluation. Those symptoms may have a less serious explanation, but age alone shouldn’t be a reason to dismiss them.

And there’s an important distinction between routine screening and diagnostic testing when someone has symptoms.

The same principle applies to pain. Pain is a personal experience. We can’t determine how much someone hurts simply by looking at them. When a patient reports significant pain, that report deserves to be believed and taken seriously, even when the cause isn’t immediately clear.

Medical professionals bring years of education, training, and experience to these conversations. Patients bring something equally valuable: firsthand knowledge of what they’re experiencing.

Good care requires both.

 

Listening Beyond the Symptoms

Sometimes what a patient needs to share isn’t a symptom at all.

It’s a fear.

A person facing a serious diagnosis may be worried about pain, losing their independence, becoming a burden to their family, or how they’ll manage financially. Someone considering a treatment may be less concerned about the medical procedure itself than about whether they’ll still be able to do the things that make life meaningful.

Those concerns don’t always come up when the conversation focuses entirely on test results and treatment options.

That’s why questions like “What matters most to you?” or “What worries you most?” can be so important.

They create space for a different kind of conversation.

Listening doesn’t mean a healthcare professional can always provide the answer a patient hopes to hear. Sometimes the medical realities are difficult, and the options are limited.

But even when the answer can’t change, the way we arrive at that answer matters.

Patients deserve to understand their options, have their concerns acknowledged, and participate in decisions about their care.

 

Bringing the Patient Voice Into Research

This same philosophy extends beyond the exam room.

As a patient research advocate with PIVOT at The University of Kansas Cancer Center, I’ve had the opportunity to work alongside researchers who are developing new approaches to cancer prevention, diagnosis, treatment, and care.

Our role isn’t to replace scientific expertise. It’s to bring the patient and caregiver perspective into conversations that might otherwise focus primarily on the science.

We ask questions such as: Does this research address something that matters to patients? Are we considering how a treatment might affect someone’s quality of life? Are the expectations for participating in a study realistic? Can patients understand the information we’re sharing with them?

Sometimes a question that seems straightforward from a research perspective looks very different to someone who has experienced cancer firsthand.

With Research Week coming up at KU Cancer Center in early November, I’ve been thinking about the value of bringing those perspectives together.

Research can lead to remarkable discoveries. But the people who will ultimately benefit from those discoveries should have a voice in the process.

In some ways, it’s not so different from the question my orthopedic surgeon asked me.

What does success look like to the person whose life we’re trying to improve?

 

Being Heard Shouldn’t Require a Fight

We talk a lot about the importance of patients advocating for themselves. Ask questions. Speak up. Seek a second opinion when necessary. Make sure you understand your treatment options.

I believe in all of those things.

But I also believe we need to recognize how much we’re asking of people who may already be frightened, exhausted, in pain, or overwhelmed by a diagnosis.

Not everyone has the confidence, knowledge, resources, or support to keep pushing when they feel their concerns haven’t been addressed.

Patients shouldn’t have to become expert advocates simply to have their voices heard.

Healthcare works best when listening is part of the process from the beginning, rather than something a patient has to fight for.

When I think back to my conversation with my orthopedic surgeon, what stands out isn’t just the question he asked. It’s that he made room for my answer.

He understood that a successful surgery wasn’t simply about what an X-ray might show or how well a new joint functioned. It was also about whether I could get back to living the life I wanted.

Good healthcare requires medical knowledge, scientific discovery, and skilled professionals. But it also requires curiosity, compassion, and a willingness to listen.

Because behind every diagnosis, every treatment decision, and every research question is a person whose experience matters.

And sometimes, the first step toward better care is simply making sure that person is heard.