Why patient engagement won’t be fixed by Friday
I have lived with chronic pain for more than 37 years.
I have facilitated a peer support group in Los Angeles for 27 of them.
You learn something when your work is measured in decades instead of quarters. You learn that the things most worth changing rarely change quickly — and that this is not a reason to stop pushing. It is a reason to push differently.
Patient engagement is one of those things.
The temptation of the quick fix
We love a quick fix in this country. A new toolkit. A new checklist. A one-hour training. A patient advisor added to the committee the week before the grant deadline.
I understand the temptation. When you live with pain, waiting is not an abstraction. Every year the system takes to improve is a year measured out in someone’s mornings — in the slow negotiation of getting out of bed, getting dressed, getting through.
So believe me when I say I am not counseling patience because the wait is painless. I am counseling it because I have watched thirty-seven years of quick fixes come and go, and the quick fixes are the ones that didn’t last.
Here is the hard truth I have come to accept:
Patient engagement is not a problem you solve. It is a culture you grow.
And cultures grow slowly. You can’t rush a garden by pulling on the plants.
Consider the players
Part of what makes engagement slow is that no single person owns it. It lives in the space between many players, each moving at their own speed.
Researchers work on grant cycles that run three to five years from idea to funding, and years more from funding to publication. A study designed without patients today will still be publishing without patients well into the next decade.
The pipeline has a long memory.
Funders are moving — genuinely moving — toward requiring meaningful engagement. But a policy written at headquarters takes years to reach the study coordinator recruiting participants in a clinic hallway.
Guidance travels slower than we’d like, like light from a distant star: what you’re seeing now was decided years ago.
Clinicians are stretched so thin that even the ones who believe in partnership struggle to find fifteen unhurried minutes to practice it.
Institutions — universities, hospitals, journals, review boards — are built to resist sudden change. That is not entirely a flaw. The same inertia that slows good ideas also slows bad ones. Stability and stubbornness are the same trait wearing different jackets.
And patients — we come to the table with bodies that don’t keep office hours, with energy we have to budget like money, and with a lifetime of being talked about instead of talked with.
Every one of these players moves at a different speed, and engagement only works when they move together. That is not a sprint. It is a convoy — and a convoy travels at the speed of its slowest vehicle.
Inertia is not the enemy
I used to think institutional inertia was malice. Mostly, it is just mass.
A national research enterprise is an aircraft carrier, not a speedboat. You do not turn it by shouting at the rudder. You turn it by applying steady pressure, in the same direction, for a long time.
The danger isn’t that the system moves slowly. The danger is that we mistake slow for stuck, burn out, and leave the table just before the turn begins. I have watched talented advocates do exactly that. The system didn’t defeat them. The timeline did.
The glacier is moving
Because here is the part the frustration can blind us to: we are not waiting for the turn to begin. It has begun. Look at what exists today that did not exist when I started.
The ENGAGE report, putting the case for engagement on the record.
PCORI, which wrote patient partnership into its DNA and puts patients on merit review panels with real scores.
CDMRP, where consumer reviewers have weighed in on research funding for years.
NIH HEAL’s K12 program, teaching the next generation of pain researchers how to partner with us before the first grant is written — not after.
The PURPOSE Network, bringing lived-experience voices into the national community of pain scientists.
The USASP Community of Practice, where researchers and people with lived experience are working out, together, what real partnership looks like in practice.
The Camden Coalition, putting patient empowerment on the stage instead of in the appendix.
The Mayday Fellowship, equipping people who live with pain to carry that experience into the public conversation.
The PATIENTS Professors Academy, training patients to teach the researchers.
That is naming a few. I have seen several of these from the inside, and they are not window dressing. They are patients moving, program by program, from being consulted to being counted.
Thirty-seven years ago, almost none of this existed. Today it is an ecosystem.
And yes — the pace is glacial. But think about what a glacier actually is. A glacier is not slow water. It is unstoppable ice. It moves inches a day, and it does not care what is in its way, and given time it carves valleys out of solid granite. Yosemite was cut by a glacier.
Glacial does not mean stopped. Glacial means patient force that nothing withstands.
What the long game looks like
Playing the long game does not mean waiting politely. Patience and passivity are not the same thing.
It looks like showing up to the meeting after the meeting where nothing seemed to happen. It looks like mentoring the advocate who will still be doing this work when you can’t. It looks like writing the comment letter, reviewing the application, sitting through the webinar — and then asking the question I keep coming back to, every single time: does the patient at this table have a vote, or just a seat?
Readers of this newsletter have heard me say it before. I will keep saying it, because it is the whole test in one sentence:
A seat at the table is not the same as a vote.
That question is also the diagnostic. Patience is owed to systems that are turning — not to tables that never intend to count you. Ask it long enough, and a glacier reveals itself by moving. A wall reveals itself by not.
I have sat on review panels where a patient’s score counted exactly as much as a scientist’s. That didn’t happen because someone had a good week. It happened because people pushed for it, quietly and repeatedly, for years before I ever got there. I am sitting under a tree somebody else planted.
Progress in this work compounds like interest. Each patient who reviews a grant makes the next review a little more expected. Each study that partners well makes the next partnership a little less remarkable. None of it is dramatic. All of it accumulates.
My support group has met for 27 years. No single Tuesday changed the world. All of them together changed hundreds of lives — starting with mine.
Plant the trees
If you are new to this work and frustrated by its pace: good. Frustration means you can still see the gap between what is and what ought to be. Keep that. It’s fuel.
But pair it with patience — not the passive kind, the stubborn kind. The kind that outlasts a grant cycle, a leadership change, a fashionable framework or two.
Plant trees you may never sit under. Someone will.
The views, positions, and recommendations expressed in this article are based on my personal experiences and independent research. They are solely my own and do not necessarily reflect the views, policies, or positions of the American Chronic Pain Association (ACPA), or any federal program or committee on which I serve. AI was used for research, editing, and organizing; final text is my own.