The Long Game
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…
The Man on My Wall
On comparing yourself to the person you used to be Ever compare yourself to the person you used to be? I don’t have to imagine him. He hangs on my wall. A wall full of medals and certificates, framed and dated, every one of them saying the same thing: this man was competent at his…
Two Emergencies at Once: Earthquake and Wildfire Readiness When You Live with Chronic Pain or a Chronic Condition
For most people, an earthquake or a wildfire is a single emergency — the ground moves, or the air turns to smoke, and then the long work of recovery begins. For those of us living with chronic pain or a chronic condition, it is almost always two emergencies stacked one on top of the other.…
The Scale That Asks What You Can Do
How the ACPA Quality of Life Scale measures the day, not the hurt. Every person living with chronic pain knows the question. You walk into the clinic, you sit down on the paper-covered table, and someone asks you to rate your pain from zero to ten. I have answered that question for thirty-seven years. I…
The Science Speaks for Itself
A clinician said that recently. I have been thinking about it ever since. Someone passed along a remark a clinician had made. The question was whether patients belong in the room where research gets designed. The clinician’s answer was clean and confident: they did not need to hear from the patient. The science speaks for…
How to Become a Chronic Pain Advocate (One Path, Not The Path)
People ask me how I got into chronic pain advocacy. The honest answer is I didn’t plan it. I lived with pain long enough that I started paying attention. Then something specific happened. I joined a chronic pain support group, and sitting in those rooms, I realized the problems I’d been facing weren’t mine. They…
The Folded Sheet of Paper in My Pocket
What twenty minutes at the kitchen table taught me about fifteen minutes in the exam room I have been a patient with chronic pain for a long time. Long enough that I have lost count of the exam rooms. Long enough that I can tell, in the first thirty seconds, whether the visit is going…
You Can’t Pour Water From a Broken Pitcher
For three days this week, I could not think past the end of my nose. A flare of chronic pain arrived with complications from diabetes riding alongside it, and the two of them together cleared my calendar without asking. I stayed in bed. I waited. My only job was to let my body do whatever…
What the ENGAGE Report Means for a Chronic Pain Advocate
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Who Is a PWLE?
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Getting to Know Laura
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Same Ocean: What a Chronic Pain Support Group Actually Offers
We all have different situations, but we all swim in the same ocean. You are not alone in this. The first time I walked into a chronic pain support group, I was looking for a fix. Not a cure — I had given up on that word — but something. A practical tip I had…
What PCORI Means by Patient Engagement
A guide to the framework, the evidence, and the documents that anchor a decade of work If you have spent any time around patient-centered clinical research in the United States, you have heard PCORI’s name. The Patient-Centered Outcomes Research Institute is an independent nonprofit established by Congress in 2010 and reauthorized in 2019, funded through…
What I Said When the Chair Asked Us to Pick an Animal
Notes from the PCORI Patient Engagement Advisory Panel — Spring 2026 Before the first session began this morning, Keneshia Bryant-Moore — chair of PCORI’s Patient Engagement Advisory Panel — asked each of us to characterize ourselves as an animal. An icebreaker. A way to ease a room of strangers into a long working day. Around…
The Pain We Don’t See, The Data We’re Starting to Understand
Electronic Health Records, Chronic Pain, and the Fight for Meaningful Data Chronic pain has always lived in a difficult space. It is real. It is widespread. It is costly.And yet, for decades, it has remained largely invisible in the very systems designed to treat it. For most of that time, if you were living with…
Patient-Friendly Summaries of Clinical Trials
What Is a Patient-Friendly Summary? A patient-friendly summary of a clinical trial is a clear, plain-language explanation of what a study was trying to do, who was involved, what was found, and what it means in real life. It is not a rewritten abstract.It is not a technical document with simpler words. It is a…
California Legislative Updates for People Living with Chronic Pain
Provided by the Los Angeles Chronic Pain Support Group Decisions made in the California Legislature directly affect people living with chronic pain. Laws and regulations can influence access to treatment, insurance coverage, prescribing policies, prior authorization requirements, and access to multidisciplinary care. Many patients do not realize how directly state legislation can affect their daily…
To Researchers: If You Want Patients Involved, Say So
Patient Engagement I hear researchers say they value patient engagement all the time. I believe most of them mean it. But too often, the value of patient engagement isn’t made visible or actionable to the people it’s meant to include. From the outside, the research process often appears closed. Invitations aren’t clear. Roles aren’t explained. …