Researcher Spotlight

The Rule, Not the Exception

A conversation with Katie Holzer, clinical social worker and pain researcher at Washington University in St. Louis, on what it takes for a person with pain to be on the team from the first day.

By Tom Norris

Over the back fence

I asked Katie how she would describe herself to a neighbor.

“Katie Holzer. I live in St. Louis, Missouri. I’m a wife, a mom, a clinical social worker, and an assistant professor at Washington University.”

She lives in the house she grew up in. She and her husband bought it from her parents. She calls it a bit of a bubble. She loves the city, and working at Washington University in St. Louis (WashU) is, especially for someone from St. Louis, a dream.

She is close to her parents who encouraged her to be curious and thoughtful, but also intentional, and her two brothers. A dog. Tennis, which mattered. Her doubles partner from those years is still her best friend. She describes herself in school as balanced. Good grades, but not at the cost of family or friends.

She reads every night before bed. Her favorite book is Gone with the Wind. For live music it was always Dave Matthews Band, though right now the soundtrack is whatever her kids like.

The questions that would not go away

Katie did her master’s degree in social work at WashU, then an internship in psychiatry at Barnes-Jewish Hospital. She stayed about five years as a clinical social worker.

She loved it. She also kept running into questions nobody had time to answer.

“All different processes and assessments. Which are actually helping? What happens when patients get this standard of care? Do we see different outcomes? We couldn’t really answer those questions systematically. We just didn’t have time to dig into them.”

She worked on a couple of projects with psychiatry residents and realized she wanted to be able to answer the questions herself. Research looked like a way to keep her clinical brain and answer questions about why we do what we do and how can we improve.

What got her over the line was a conversation with the person who became her doctoral mentor. He made research small enough to pick up.

“Just take a data set. Look at what questions they asked. Ask a question and see if you can answer it. I always thought you had to have this really, really good question. He was so casual about it that I thought, oh, this is not a big deal. It is. But it doesn’t have to be scary.”

She finished the doctorate and came back to WashU, which is what she had hoped for all along.

Two licenses, one head

Katie is a clinician and a researcher. I asked whether the two ever disagree.

“Absolutely. One of the biggest tensions is how long research can take to make its way into clinical practice. When you learn that something helps or doesn’t help, the clinician in me wants that knowledge to affect care immediately. Research doesn’t work that way. There are good reasons for it. There is also red tape.”

The other direction is easier. Being a clinician keeps her research questions tied to a real problem. Being a researcher taught her to step back, question her assumptions, and listen.

“Just because you anecdotally see something in one group, the data could tell you something completely different. It surprises you. It’s humbling. That’s why it’s important to look at both.”

I told her about the figure I hear most, that it takes 17 years for a finding to reach someone like me, and that guideline panels add years on top. I asked if there was any way to speed that up.

She did not pretend to have an answer.

“The only time I’ve seen a big difference in the timing is when a really important stakeholder gets their hands on it. In my work, that may mean hospital administration. I have no idea how to expedite it on a large scale.”

What she has seen, in focus groups with clinicians who are not researchers, is that the people at the bedside are not the obstacle.

“It’s not that clinicians want to keep doing what they’re doing even if it isn’t working. They get excited about new ways to treat the condition they treat. They go out and try to make it part of their practice. That was something I didn’t anticipate learning. It’s been hopeful to me.”

How pain found her

Katie’s research began in mental health for older adults facing surgery through the Center for Perioperative Mental Health at Washington University. Pain was not the plan.

“I hate to say this, but I did not realize how close the relationship between pain and mental health was.”

Her team’s primary outcomes were anxiety and depression. A colleague and mentor, pain researcher Simon Haroutounian, asked whether they could measure pain as well. She is glad he did.

“Sleep was such a big issue. They couldn’t sleep because of their pain. Not being able to sleep made them more anxious or more depressed during the day. It came up all the time. Because we measured pain, we were able to test whether our intervention for mental health had an effect on pain. It did. Patients who received the mental health intervention had less pain after surgery.”

That one added measure opened a line of work she is still following. How does the connection run? Are there adaptations that need to be made? She is trying to find out.

The first room

Before any of this was called engagement, she was involved in teams conducting qualitative research, including focus groups and interviews with clinicians and people who had been through surgery. Those people were research participants, not partners. But the team learned enough to back up and start over.

“We need to not be asking the patients the question. We need them to help us write the questions.”

She was working with senior researchers who had money available to do that before a grant was written. She called that fortunate and said the funding question comes up all the time. It let her team bring patient partners in at the beginning and keep them through the proposals.

Separately, Dr. Haroutounian was asked to help write consensus recommendations on engaging people as partners in pain research. He asked Katie if she was interested.

“I wasn’t sure what I was getting myself into. The meeting was led by Christin Veasley and Bob Kerns, with several Zoom presentations led by various stakeholders on the topic. That was my first way into patient engagement in pain research. It was an amazing experience, and it has led to a lot of different projects for me.”

I asked what the very first meeting with a PWLE advisor, not a participant, was like.

“There were so many mistakes. I thought we could all show up at a certain time and get up to speed at the meeting. I did not appreciate how much prep work was required to do this meaningfully. And work after the meeting. That first time was rough. But I think it shone through that we cared.”

Much of it happened during the COVID-19 pandemic, on video. Video reached communities they could not have reached in person. It also meant no one ever shared a meal.

She told me about a moment after one of those meetings. The team had been calling on a patient partner by name to make sure that person had room to speak. The partner did not want that. It felt like being singled out.

“We thought we were empowering them. After the meeting they said, I’ll speak when I have something to say. I really appreciated that feedback. Even if we had said at the beginning, we’ll be calling on people, that would have made it better. Our intention was good. It was not received the way we were hoping.”

What a person with pain can bring to the door

I told her about my first patient advisor role, 12 years ago, when the team did not know what I was for and we had to learn together. A lot of people walk in as advisors and are not prepared. I asked what a PWLE can do on their own side, so the whole burden does not land on the researcher.

Her first reaction was that preparation is the researcher’s job. Then she thought about what has actually helped her.

“I really appreciated when patient partners asked me questions on the front end. I learned things I assumed were known that weren’t. What has been most useful is meeting people one on one, in person when I can, and going through the idea at whatever stage it’s in. What this is going to look like. What the timeline typically is.”

Then she got to the thing I hear in every room.

“We use so many acronyms in research that I just assume are known, and they’re just not. It can be so distracting. You’re stuck on, what does that word mean? Everyone knows what a PI is, and I have no idea why they keep saying PI. It’s hard to engage at all.”

For the record, PI means principal investigator. That is the person responsible for the study.

Her institution offers a course for PWLE on how the research process works. She thinks something that basic is valuable everywhere. She added that researchers need to know what is taught in it too.

Where the advisors come from

I asked where she finds her patient advisors.

The first name she gave was Christin Veasley, of the Chronic Pain Research Alliance, whom she has worked with since the consensus paper. Katie and I have that in common. I asked Chris once, as old as I am, whether it was all right to call her my mentor.

After that, it is the surgeons. In her experience, people respect their surgeons, and if a surgeon suggests joining an advisory group, people listen. She flagged the risk herself.

“You don’t want a patient to feel forced to do something.”

The rest comes through the United States Association for the Study of Pain (USASP) and the reputation WashU holds in its own community.

I described an idea I have been working on: one place a researcher could go and find people with pain who have volunteered to advise, listed by condition, so a low back pain study could reach people with low back pain. I asked if that would help.

“Yes, absolutely. Especially for junior researchers who don’t have those networks. And for senior researchers, because it can’t be that you rely on the same patient partner group. You’re going to stop learning new information.”

She also thought it would take the fear out of the first contact.

“Cold calling is always scary. Knowing these are people who actually volunteered to be part of it, that would be such a great idea. And in that first email you can be straight up. I don’t have funding at this time. The goal is to get funding, and you would be part of that.”

The hardest recommendation

The consensus paper Katie helped write came out of IMMPACT, the Initiative on Methods, Measurement, and Pain Assessment in Clinical Trials. It was published in the journal Pain in 2024 with Dr. Haroutounian and Katie as first authors and dozens of co-authors, Chris Veasley among them. The focus was engagement in clinical trials specifically. Katie described a process where many different stakeholders, including journal editors, presented over Zoom.

I asked what the process was like and what she took from it.

“It was really hard to get people to agree on the recommendations. We had to go through a long process to get everyone on the same page, and there were dozens of us. But the recommendation I found hardest to actually apply is starting engagement early. A lot of researchers don’t have funding at that stage. And decisions made before a proposal is submitted have downstream effects on everything else.”

“That’s exactly where patient partners can have an enormous influence. At the beginning of a proposal.”

I told her that if I know a project is going out for funding, I have no problem giving my two cents before there is money.

Bigger than pain

One of the things I am pushing for, behind the curtain, is for what we learn about engagement in pain to apply to all research. I asked if she had seen that anywhere.

“This has been done in cancer and infectious disease research. It feels so ingrained there, and they have a great infrastructure for it.”

She thinks pain is a good place to build from precisely because it is not one thing.

“There are so many different pain conditions. The consensus recommendations we wrote do not have to be specific to pain at all. You could adapt them to any condition. I was writing a survey once and listed specific pain conditions people could click. My patient partners read it and listed about 30 more that I didn’t have on there. All those experiences are going to be different. And pain is often a comorbidity of other conditions.”

Chris told me once that you eat the whale one bite at a time. So we agreed to take care of pain first.

A committee she did not know she was on

Katie is part of the USASP PWLE Community of Practice. I asked how she got there.

“I was at USASP a couple of years ago and Chris said, you’re on the committee, right? I said, what committee? She said, oh, you’re on the committee. So I joined.”

What she gets from it is a touchstone.

“It can feel so siloed as a researcher, even at a great institution where I know all these people. I wrote a grant proposal on behavioral interventions and I didn’t know Rob Edwards that well, but I’d gotten to know him through the community. I cold called him and asked if he would consult on it. He graciously agreed.”

“It’s special being part of something new that I can have an impact on. Just like we say about patient engagement, it should start from the beginning. I feel empowered to actually mold this community of practice. My opinion matters.”

I asked how we get more people with pain into that room. She started answering before I finished the question. She could send it to her institution’s internal advisory board members. Colleagues could put it in their newsletters. An infographic would help. Then she named the thing that actually works.

“It is nice to get a personal invite from someone. Hey, this is a really non-intimidating space, and you are welcome.”

Where she wants it to go

“In the past couple of years, when I submit a paper to a good journal, they ask about patient engagement, whether we involved people with lived experience. I see it now in grant applications, including at the National Institutes of Health (NIH). It does seem like it’s going to be a requirement. And people need to know how to meet that requirement in a way that isn’t just checking a box.”

She presented on engagement at a doctoral program lecture series.

“It was deer in headlights. What in the world are you talking about? How would we even start doing this? Which is such a shame, because in this community I see that it should not be a barrier at all.”

What she wants is for engagement to be taught early, in training programs, so that a new researcher meets it as the normal way to work.

“If it’s the rule and not the exception, we’ll do it better.”

She would like the recommendations to stop being sorted by disease. Not recommendations for pain and recommendations for something else. Recommendations. She thinks the Patient-Centered Outcomes Research Institute (PCORI) is a good starting place, and that institutions have to back it. Where they do not, she said, people like her have to bring it to their attention.

Trusted messengers

I have been trying to work out who the trusted messengers are in a community, the people a finding has to pass through before anyone believes it. I asked where she starts.

“We have patient and family advisory councils at our institution, at the hospital level. Community leaders joined with hospital leaders. It’s a wonderful resource to present to that group and get their feedback. In St. Louis, that’s where I’d start.”

Her second answer was her church. She is involved there, and it has turned out to be a welcoming place to find partners. She has taken calls from people who heard about her research from someone in the pews.

I told her St. Louis might be different. I live near the University of Southern California in a neighborhood that is mixed in every way you can name, and it is hard for me to find the trusted messenger for the person down the street. My own church and my support groups I can reach. That is not the same as reaching everyone. We left it there, as something we both still have to work on.

What she will not ask about

Near the end, I asked if there was anything we had not covered. Katie went back to a question I had sent ahead: describe a time a partner told you something you disagreed with, and you went their way anyway.

“I was trying to think of an example and I realized I really can’t. One thing I’ve tried to do is come into those sessions specifically expecting to listen and learn. If I don’t understand a recommendation, I pursue it rather than dismiss it.”

Then she drew a line.

“I am really intentional about not asking people for input on something I cannot actually change. If we have a validated measure for depression, I can’t change the questions on it. So I can’t ask people, do you like this measure? It doesn’t matter if they do. What I can do is add something on top of it and get their input on that.”

Where she can change things, she does. Her recruitment materials used to lean on the words depression and anxiety. Her patient partners told her those words push people away.

“A lot of people said, I’m sad, but I don’t relate to the word depression. Or, I’m lonely. I’m stressed. Changing the language has been super important. That is something tangible I take from that.”

Then she said the line I keep coming back to.

“I don’t know how your research has meaning unless you involve patients. I can’t imagine coming up with a question, answering it, disseminating it, and then just being done. Seeing how anything impacts patients, and their excitement about it, and the conversations we have. It’s the best part of all of it.”

I told her that was the crux of the whole interview. She said it was something she feels passionate about.

It showed.

Selected work mentioned in this conversation

Haroutounian S, Holzer KJ, Kerns RD, Veasley C, Dworkin RH, Turk DC, et al. Patient engagement in designing, conducting, and disseminating clinical pain research: IMMPACT recommended considerations. Pain. 2024;165(5):1013–1028. Open access.

Holzer KJ, Bartosiak KA, Calfee RP, Hammill CW, Haroutounian S, et al. Perioperative mental health intervention for depression and anxiety symptoms in older adults study protocol: design and methods for three linked randomised controlled trials. BMJ Open. 2024;14(4):e082656.

Katie also mentioned a forthcoming piece in Pain, co-written with a patient partner, about a workshop they gave together at a scientific conference.

Disclosures

This article is based on a recorded video conversation between Katie Holzer and Tom Norris on September 2, 2026. Katie agreed to the recording at the start of the call. She reviewed and approved the text before publication and had the right to change or remove anything in it. No compensation was exchanged. Tom and Katie are both connected to the USASP PWLE Community of Practice. Quotations have been lightly edited for length and clarity.

The views, positions, and recommendations expressed in this article are based on my personal experiences. They are solely my own and do not necessarily reflect the views, policies, or positions of the American Chronic Pain Association (ACPA), the Patient-Centered Outcomes Research Institute (PCORI), or any federal program or committee on which I serve. AI was used for editing and organizing; final text is my own.