The clinician walked in, glanced at what the aide had written down, and started.

He did not ask whether the aide had gotten everything. He did not ask whether I agreed with what came next, or whether I understood it. I wrote about that room in a note to the clinicians who will be joining the Community of Practice, and I asked them to leave that habit at the clinic door.

This note is about my half of it.

He did not ask. And I did not tell him he had not asked.

I was in the room the way the chair was in the room, and I sat like one. I answered what I was asked. I waited to be told what happened next. That is the other half of what the word patient means in practice. Not only a person things are done to. A person who has learned to let them be done.

I learned it honestly. Thirty-seven years of appointments teach you that the fastest way out of the room is to agree, and that the question you did not ask costs you nothing today. The habit is not a weakness. It is what the clinic trains, and it works there.

It does not work in the Community of Practice.

What the word member changes

The Community of Practice page on the USASP website says it wants to build the group from the ground up with member input.

Member.

The same word for me as for the researcher across the table. I have spent a long time reading that word as a promise made to me. It is also a claim on me. A member does not wait to be told what happens next.

The gown stays in the clinic. Nobody in this room is going to take it off for you.

So here is what I would ask of you, one habit at a time. Each one is a habit I am still unlearning myself.

Say what you work on before what you have

Your condition is where your expertise comes from. It is not what you bring to the room.

When you introduce yourself, lead with the work. The support group you sit in. The advisory board. The consent form you rewrote in plain language. The study you read because you were curious. The diagnosis will come up on its own, and you can talk about it when it does. But if you lead with it, you have placed yourself, and everyone at the table knows which box.

At my first study meeting I said my name and that I had chronic pain, and then I stopped, because I did not know what else they needed. Nobody had told me what I was there for. I have since learned to say it in two sentences, and I would rather you learned it before your first meeting than after.

Say “I don’t understand,” and then stay

“I don’t understand” is a tool. It is not an apology.

Say it the first time a word goes by that you cannot define. Not the third time. By the third time the conversation has been built on that word, and you have been nodding along to a building you cannot see.

Then stay. Sometimes the answer will be a softer subject, or a simpler question handed back to you in place of an explanation. That is the room deciding what you can carry. Bring it back. “That’s not what I asked.” Say it kindly. Say it anyway.

And learn their words. Recruitment window. Primary outcome. You are not expected to know them walking in. You are expected to ask, and to remember the answer.

Make the point, then hold it

In this room, your pain is evidence. It is not a case to be managed.

Before you describe a bad day, know the point you are making about the research. The recruitment window falls in the month you cannot leave the house. The consent form is longer than your attention on a bad day. Say the point first, then the story that proves it. If you tell the story first, you may never get to the point, and the room will remember the story.

Sometimes a clinician will answer with a treatment suggestion. It is a reflex, and it is usually kind. Let it pass, and then say the point again. “Thank you. The point I was making is about the recruitment window.” Your care is a conversation for afterward, if you want it, and only if you want it.

Let them argue with you

The surest sign that you have been taken seriously is being disagreed with on the merits.

When a researcher pushes back on your idea about a study design, that is not the moment to fold. It is not the moment to reach for your story as a trump card that ends the discussion, either. It is the moment you have been waiting for. Answer the argument. If you were wrong, say so. If you were not, hold your ground the way the statistician holds theirs.

Agreement that arrives too fast is the sound of a box being checked. When you hear it, ask the room one question. “What’s wrong with it?” If nobody can say, you have not been heard yet.

What I have asked of them

The note beside this one asks the clinicians in the room to do their half. To ask what you work on before what you have. To explain a word once and keep going. To hear the point before they reach for a plan. To argue with you. None of that is a favor. It is what the word member means.

If you are getting less than that, say so in the room. Not in the parking lot afterward.

The room is still being built

The Community of Practice was introduced in a webinar on February 23, 2026 and launched in person at the USASP annual meeting in Philadelphia on March 24. Its own page says the shape is not finished. The 2026–27 committee call says the committee is still working out leadership, schedule, and activities, and it is asking the people who show up to help decide.

Whoever is in the room while it is being built decides what kind of room it becomes.

I would like to be the kind of member who does not wait to be told what happens next.

— Tom