PWLE Voices began as a place for people with lived experience to tell their stories. But I have always believed the team has to be bigger than us. If we want research that serves patients, patients and researchers have to know each other. Not as titles across a table. As people.

So this issue continues something we started in Issue 4, when Katie Holzer sat for the first of these conversations.

Dr. Steven George is a physical therapist turned pain researcher at Duke University. I met Steve on a guideline development panel, my first, and we have crossed paths ever since. I serve as a patient advisor on one of his trials today. When I asked him to be the first researcher to sit for one of these interviews, he laughed and said he would set a standard that would be easy to clear.

He set the bar higher than he thinks.

“They weren’t my questions”

Ask Steve his story and he does not lead with titles or grants. He tells you he was a clinical therapist who became a researcher because of the patients he met, and the questions they asked that he could not answer.

“They weren’t my questions; they were patients’ questions,” he told me. “When I came out of school, I thought I’d be able to handle them. And these people coming to seek care from me asked legitimately reasonable questions. I’d go look in the literature, and it wasn’t there.”

He has been in the research phase of his career for almost 25 years now. Every research question he has chased since, he insists, started in a clinic room with a patient he could not help.

The questions that built his career were never his own. They were ours.

The dumbest kid in the smart class

Steve grew up in central New York and moved to Ithaca for high school. A typical kid, he says. Baseball, swimming, harsh winters, a lot of time outdoors.

Ithaca is a college town, and the college bled into the public schools. His high school math department had three PhDs. He jokes that if he ever writes his memoirs, the title will be The Dumbest Kid in the Smart Class.

But listen to what he took from it. “It taught you to sit back and listen to people who are smarter than you,” he said. “There are some other skills I could bring to the table. Maybe let’s work together on this instead of trying to figure out who’s the smartest one.”

That is the seed of team science. He planted it before he ever wore a lab coat.

From there it was West Virginia University for his physical therapy training, Pittsburgh for his first clinic, first house, and first child, Florida to become a polished researcher, and North Carolina, where his kids went to college and where he now holds Duke football season tickets. A basketball school. He knows. He goes anyway.

And if you only know Steve from conferences, here is what would surprise you: he keeps three old-school video games in his house. Stress relief, nostalgia, and a running high-score battle with his youngest daughter. There is an era of the 1980s, he admits, that he can go pretty deep into, possibly the day before a conference.

What the clinic taught him

Steve’s first clinic he directed was in downtown Pittsburgh, and it served two very different communities. Attorneys and bankers came in on their lunch hours, transactional and rushed. Older patients from the Hill District, a mostly African American neighborhood next door, came in with time and stories.

It was there, in the late 1990s, that patients first told him about their mistrust of the medical system. Things that are now taught routinely in medical education, he learned first from the people in front of him.

“The only reason I think I earned that trust is we had time, we sat, and they knew I was going to listen,” he said. “They’re not going to be impressed with my test scores. They’re going to be impressed with me as a human.”

He told me about a woman with workers’ compensation and excruciating wrist pain. Nobody believed her. They thought she wanted off work. Her X-ray had come back clean. Steve had seen enough wrists to know some fractures take time to show on film, so he called the physician and pushed for a second X-ray. He documented everything.

Two weeks later she came back with a cast on her arm, and she thanked him. For listening. And for pushing.

Believing the patient was the diagnostic tool that worked.

Why doctors and patients talk past each other

I asked Steve a question that has bothered me for decades. Why don’t doctors listen to patients, and why don’t patients listen to doctors?

His answer was not cynical. He believes both sides are well intended. The patient wants to get better. The physician wants to do what is best. “I think that is in alignment,” he said. What breaks it is time. Fee-for-service medicine leaves no room for a real conversation, and physicians are trained to diagnose, not to communicate.

Physical therapists, he pointed out, are not naturally better communicators. Their care is simply longitudinal. Weeks of visits build rapport that a fifteen-minute appointment never can.

It matches what I teach in my support groups: walk in with the questions that matter most, and treat the visit as two people working toward a common goal. As Steve put it, for pain management you want the person who is the most skilled technically, but you also want someone who is skilled at building relationships. Nobody teaches the doctor that. Nobody teaches the patient that either.

Biopsychosocial, in plain language

Steve’s research lives in the biopsychosocial model of pain. I asked him to explain it for someone who has never heard the word.

Pain, he said, was once studied almost like a reflex. Tap the knee, the leg jumps. Pure biology, low variability. But the field learned that mood changes how pain is expressed. That is the “psych.” And over the last ten or fifteen years, researchers have added the “social”: the stress of where you live, the resources you can reach, the support you have.

“The study of the nerve receptor and how it transmits nociception is not sufficient for the wide variety of expression,” he told me. Put the pieces together and you get better assessment, and hopefully, over time, better treatment.

Anyone who went through the old in-hospital pain management programs, where every specialty sat at one table, will recognize this. That way of seeing pain is what taught me to live with mine.

“Isn’t that cute”

When Steve moved from the clinic into research, chronic pain was not yet a public health priority. The opioid epidemic had not yet forced the issue. Studying the psychological side of pain earned him pats on the head.

“It wasn’t resistance as much as being patronized,” he said. “Oh, isn’t that cute. You’re studying the psychological part of pain. Come back to us when you want to study something real.”

He followed his curiosity anyway. Ten years later the same people were praising the work. He holds no grudge. His answer to them is the answer of a team builder: join in if you want, or stand aside.

Smaller victories, not less important ones

Steve has written that chronic back pain treatment has not kept pace with the science. The frustration shows up when he looks at real-world data and sees clinical patterns embedded for decades, unchanged by what we now know. The people seeking care are the ones paying for that lag.

He is honest about what current science offers. We are not operating on a cure model for chronic pain. We are operating on incremental improvement. But he refuses to let “incremental” mean “trivial.”

Being told it is okay to stay active while you hurt. Learning what to do during a flare so you do not start over from zero when it ends. Mindfulness that does not erase the pain but lets your whole system operate in a slightly different state, so you can tolerate it a little better. These can be the difference between doing half of what you want to do and doing nearly all of it.

“It’s smaller victories,” he said, “but that doesn’t mean they’re not important victories.”

Earning your way onto the playing field

Then we got to the heart of it. Patient engagement, and the harder question underneath it: patient empowerment.

Steve was frank. Researchers wondered for a while whether patient engagement was a passing fad. “Now it’s pretty clear it’s not,” he said. “There are very good examples where this has resulted in a better product of research. And one thing you can say about researchers is we tend to be bottom line. If it’s better, we’re going to do it.”

Getting a patient into the room is the easy part. That is engagement. Preparing the patient to be part of the team is empowerment, and there is no cookbook for it. Steve talks about finding teams that are open and flexible, flattening the power gradient, adjusting language and cadence. And then waiting for what he calls the magic moments, when the patient is comfortable enough to be the one who says: I know we’ve been talking about this, but what about that?

He also named something I rarely hear a researcher admit. Researchers have a clear currency for earning a place on a team. Publications and grant dollars. Patients do not have that currency yet. Lived experience is highly valued, but the field is still working out the additional ways a patient partner earns their way onto the playing field.

“I think we want those folks on the playing field,” he said. “We need those folks on the playing field.”

My own philosophy is the mirror image of his. We, the patient partners, need to prove we are valuable. Everybody at the table has requirements. So come prepared.

His advice, in two directions

I closed by asking for two sets of recommendations. One for a person with pain stepping into advocacy for the first time. One for a researcher hosting a patient advisor for the first time.

To the new advocate: be persistent, and do not take rejection personally. Every project has a life cycle, and you may be a perfect match for a project in the wrong phase. Talk to other advocates about who they have worked with. And once you find people you like working with, stick with them. The longer the relationship, the more valuable you become to each other.

To the new researcher, he offered a comparison I will not forget. Sitting before a patient panel, he tells his team, is like defending your dissertation again. “These people are going to ask questions that you can’t answer, and you may think are unfair. But you know what? It’s their questions. So you go, you listen, you’re respectful.”

It is an exercise in intellectual humility, he says. Some researchers have that experience once and avoid it forever after. His advice is the opposite. Embrace it. You cannot address everything a panel raises, but there will be gold nuggets in there, brilliant ideas and perspectives you never would have had, and you would be foolish to ignore them.

“They don’t care who you are. They just want better care for their back.”

The rock and the hill

I told Steve that for me, this work often feels like pushing a rock up a hill. Two steps forward, four back. He thinks we may actually see the change in our lifetimes. I am less sure. But we agreed on where it all points.

We are there to make healthcare better. If everyone at the table could hold onto that one thing, we would be in good shape.

I have met a lot of researchers over the years. My hope rests with the young ones, and with the people like Steve who train them. He once joked that empathy is not what people know him for. Do not believe it. Twenty-five years of research built entirely on questions his patients asked him tells you everything.

The mad scientist from the cartoons does not exist. There are only people. And some of them are listening.

— Tom