Thirteen minutes into our first conversation, Ryan Wexler was telling me about high school gymnastics, and he mentioned his back almost in passing.

I stopped him.

I said I had not realized he was actually a person with lived experience.

“Yeah. Definitely a part of the reason I’m a scientist, for sure.”

The Kid Who Asked Why

He is twenty-nine. He tells people he is a nerd, partly to break the ice and partly because it is the truest short answer he has.

“My dad was just one of those people who asked a thousand questions and was interested in learning about everything. And as a kid, I was that kid who was just like, why, why, why. But I think I actually remembered a lot of the why.”

He was bullied until high school. He grew up Jewish, born in a very Jewish suburb of Chicago and then moved by his parents to a very not-Jewish one, so that from the age of eight he was the first Jew most of his friends had ever met. He described the strange arithmetic of that — religion is a large part of who people are, and he was surrounded by people with no idea what it meant about him, at an age when he did not entirely know either.

He started lifting weights in middle school because he wanted to feel stronger in his own body than the bullying had left him feeling.

Then the pain arrived. He was thirteen. His first serious injury came at fifteen, and orthopedic surgeons and physical therapists became a fixture of his adolescence.

I asked how somebody with a bad back ends up in exercise science.

“I got this message: you can’t just sit still. And when you do sit still, this is how you sit still. And when you walk, this is how you walk. And when you lift, this is how you lift.”

By the time he started naturopathic medical school in Portland he had had his third disc herniation and his second back surgery. The surgery was the week before classes began. He started the program in a back brace.

A Degree, a Trial, and a Long Shot

He built his own undergraduate major at Illinois State because the classes he wanted were blocked to non-majors. At a school of twenty-two thousand, seven people had ever done it. He read the state higher-education requirements himself and assembled a degree out of exercise science, dietetics, and the prerequisites for naturopathic medical school.

Six months into that school, COVID closed everything. He applied for a student fellowship worth five thousand dollars and proposed a randomized controlled trial of a mindfulness-based intervention. Students are not usually permitted to run trials. He had gotten agreement in advance that if the money came, he could.

The money came.

“I was a study coordinator by day, project manager by day, medical student by night.”

It was a powered trial and five peer-reviewed papers came out of it. A postdoc at the Cleveland Clinic followed. Then a long-distance relationship pulled him back to Oregon and he applied for an NIH HEAL K12 award, which he called a long shot, because getting an NIH grant is not a great probability.

He got that too. Then he told me about the interview.

“I’m really glad that I wasn’t in the pain community before I got the K12, because that interview you have to do with the directors — I think I would have been so scared if I knew who they were. But because I didn’t know who they were, I was just talking to people. So that was easier.”

He did well in that room because nobody had told him it was supposed to frighten him.

Every one of us knows the reverse of that feeling, and knows what it costs.

Is There Any Place for Lived Experience in Science?

Patient engagement reached him before the K12 did. He read the 2024 IMMPACT recommendations on engaging patient partners in clinical pain research, the first published guidance of its kind in this field, and something settled.

“For me there was always this open question of: I’m a person with lived experience. Is there any place for lived experience in science? Because it looks like we’re just these heady people in some ivory tower tinkering with people’s lives. But those people have experiences that are really important to consider.”

He had chosen to study low back pain and sciatica, which he had lived with through multiple surgeries. He was already watching study participants walk in with versions of his own history, some close to his and some nothing like it. What he did not know, until he read the guidance, was whether anyone else in the field thought that mattered.

“That’s Like Saying Somebody Can’t Study the Respiratory System Because They Breathe”

This is the exchange I most wanted on the record.

There is an argument circulating, and I have heard it more than once. It says that a study team with a researcher who lives with the condition has its lived experience covered, and does not also need people with lived experience as advisors. It is a tidy argument and it would save a lot of money.

I said it badly. He answered it cleanly.

“I think it’s a BS idea that scientists could divorce themselves from their personal identities enough to execute something like that — to come into their work with that blank of a slate.”

“That’s like saying that somebody can’t study the respiratory system because they breathe. It doesn’t make any sense. In fact, if a respiratory researcher considered the experience of breathing in order to develop research questions, they would be a better scientist. They would come up with questions that are more relevant than if they just put their personal experience aside and started from scratch.”

Then he closed the other door himself.

“But of course, just because you have an experience doesn’t mean that someone else has the same experience. It needs to be done tactfully.”

Two Meetings, Not One

I asked what needs to improve. He did not start with money or policy.

“Getting started can be the hardest part, because there’s a lot of you-don’t-know-what-you-don’t-know. In research and health care, not knowing what you don’t know feels risky.”

He named a difficulty I had not heard a researcher name before. Bringing someone from the clinic into a research team means putting a person whose health history is the reason they were invited into a room full of people who do not know that history — and the researcher cannot tell it for them.

Then he offered the most practical thing either conversation produced.

“Don’t schedule your first meeting with a patient partner to have to check all of these boxes. I need to get to know this person. I need to tell this person about myself. I need to describe my research project. I need to describe their role. I need to describe the timeline. It’s just too much.”

“It’s good to schedule two meetings. A meeting where you truly just get to know someone — a pizza type conversation. Even if it’s virtual, really just, tell me about yourself. And then another meeting where you’re like, okay, great, I’m so glad that we got to know each other today. Let’s schedule another meeting so we can talk business.”

I know he is right because I have watched it go the other way.

I was the first person with lived experience to sit in the room at Cedars-Sinai. Penney Cowan had advised them by phone; nobody had ever been in the building. They did not know what to do with me, and for a while they did nothing with me at all. What changed it was not the study. It was the farewell luncheon for somebody I had come to know.

My mother brought breakfast in for the whole nursing faculty every other month when I was a boy, and I have never found a faster way to level a room than feeding the people in it.

Ryan’s response was drier than mine. These things are usually easier said than done, he said, and I had made it sound easy. Take someone out for some food.

Consider the alternative. A researcher once asked me to review a checklist for working with people with lived experience.

What the checklist did not have was an introduction.

It went straight into the questions. When I said they needed to say who they were and why they were asking, there was a stutter step on the other end.

Room to Disagree

I asked what else is tricky.

“There should be space for disagreement. And that can only happen if the relationship is comfortable enough for both parties to hold the disagreement.”

He meant it in both directions. A researcher should be able to say that a partner’s suggestion will not work in this population and give the reasons. A partner should be able to receive that, or to argue with it. And the researcher should be receptive when a partner thinks the researcher’s idea is a bad one.

Then he drew a sharper line. The useful contributions, he said, are not only the things that occur to us and not to them.

“The really important stuff is the stuff that’s convention — that clinicians and researchers have been doing for a long time and isn’t doing anybody any good. It requires that a patient come in and say, this doesn’t make sense. Why are you doing it that way?”

I have done that at Cedars, lost some of those arguments, and been proved right after losing a couple of them. The wall does not crack on the first hit.

Which is why the right to disagree needs somewhere to live. When agreement and compromise both fail, the person who disagrees should keep a standing right to put that disagreement on the record, and the record should travel forward with the decision.

That is the difference between a seat and something closer to a vote.

Help You, Help Me

I have spent years asking the reverse question — what we can do to make a researcher’s work easier. Ryan had already built his own version of it, running the other way.

“In my projects I offer PWLE particular training opportunities, because I want PWLE to feel like they can make meaningful contributions to the project, which requires understanding some of the ins and outs of research. If I can offer you a training — which is something outside of me and my time — then when we come back together and have future meetings about the project, your contributions will be even more helpful.”

He is spending his own time so that what gets said from the seat is worth more when it is said.

The Translator Nobody Budgets For

I asked what we had not touched on. He named something I would not have known to ask about.

“When I go into other spaces, other researchers don’t know anything about patient engagement. It has really become a thing now in pain science. It’s still getting there, but it’s come a long way. And in other domains of research — still in many health-related research disciplines — it’s not happening.”

So when he leaves a conversation with his University of Michigan colleagues and returns to his home institution and starts talking about engaging and compensating partners, nobody knows what he is talking about. He becomes the person explaining what it looks like and why it is worth doing, one paper and one introduction at a time.

“It’s a lot of legwork. And I’m not a lecturer on this topic. I’m just talking from my limited experience.”

That is a cost nobody has planned for. Train a young scientist to do this well and he becomes the unpaid translator in every room he enters afterward.

Three People

I told him how I wanted to end. What would he say to a person living with pain who has never heard the phrase patient engagement, to a researcher who has never tried it, and to the person who is both.

He said the first one was the hardest, because it is the only one he has not been.

To a person with pain. Scientists need help bringing the walls down, he said, in the same way we do. So his advice to us is his advice to them, turned around. Get to know researchers as people.

“I came into this conversation thinking up here, and then you’re just like, tell me about your childhood. And I’m like, oh, okay, that’s where we’re going. We’re really getting to know each other. It creates a level playing field. If only the researcher is getting to know the PWLE and not the other way around, the relationship doesn’t work that well — because the researcher feels like they know them, but the PWLE has no idea who the researcher is. They’re still the white coat.”

To a researcher. Turn it around, he said. Be willing to have a real relationship with the person, the way you would with a colleague, because a colleague is what you are hoping to gain.

“You’re not just trying to get something from them. The only thing valuable that could come from having a relationship with them requires a relationship with them.”

To the person who is both.

“It’s okay to admit when you don’t know things. In fact, usually it can be good, because it’s better than the alternative, which is pretending you know when you don’t.”

And then he described a pressure I had never once considered from that side of the table. The researcher is talking to someone who seems to expect him to know how the relationship will work and what this person’s role will actually be. It feels like you are supposed to arrive with a vision.

“Ideally you have some semblance of a vision. But I don’t think it needs to be perfect or totally fleshed out. In fact, if it is, you’re just setting yourself up for disappointment — because the person on the other side of that conversation should help shape what that vision ends up being.”

I have said for years that “I don’t understand” is a tool and not a weakness. I have been saying it to people like me.

It had not occurred to me that the researcher across the table needs the same permission, and has more reason to hide that he does.

“I Hope I Do”

Near the end I told him this should not stop at chronic pain. Christin Veasley and I have been saying the same sentence to each other for years — start here, then carry it everywhere else.

It is going to be a process. I probably will not see it.

“I hope I do,” he said.

He is twenty-nine, with forty years of career left. He did that arithmetic himself, unprompted, while explaining that the work done before him was his foundation and not his achievement.

A seat gets you into the meeting. The room he described — where a person with lived experience says this does not make sense, and gets an argument back instead of a thank-you — is where a seat starts becoming something more than furniture.

He was right about what that does. I have watched it work over ham sandwiches for twenty-seven years. This is the first time I have heard it described as study design.

— Tom