Los Angeles Chronic Pain
Support and advocacy information for individuals dealing with chronic pain.
Author: paintom
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What the ENGAGE Report Means for a Chronic Pain Advocate
‹ PWLE Voices — Issue 1 · June 2026 Research Spotlight What the ENGAGE Report Means for a Chronic Pain Advocate A new NIH report sets out a roadmap for how researchers should work with us. Here’s how to read it — and how to use it. In November 2025, the NIH published a report…
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Who Is a PWLE?
‹ PWLE Voices — Issue 1 · June 2026 Foundations Who Is a PWLE? Four letters, one growing role in research — and the words a major new NIH report uses to describe it. If you’ve spent any time around chronic pain research lately, you’ve probably seen the acronym: PWLE. It stands for Person —…
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Getting to Know Laura
‹ PWLE Voices — Issue 1 · June 2026 Meet a Fellow PWLE Getting to Know Laura Quiet water runs deep. A retired kindergarten teacher and reading specialist, Laura listens carefully, asks the practical question nobody else thought of, and lives by a simple rule: movement is medicine. By Tom N. · PWLE Voices 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…
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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…
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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…
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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…
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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…
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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…
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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. …
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Research Only Matters if People Know It Exists
I am a person with lived experience (PWLE) focused on improving patient engagement in clinical trials and guideline development panels. I’ve spent a lot of time collaborating with researchers, clinicians, and people living with chronic pain through my work at University of California, San Francisco, and other institutions. I’ve participated in interviews, advisory meetings, protocol…
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The Power of Connection: Why Being Part of a Support Group Matters When You Live with Chronic Pain
Finding understanding, resilience, and hope through shared experience Living with chronic pain can be isolating. Friends and family often mean well, but unless they live with it every day, they can’t fully understand the relentless challenges, the fatigue, or the emotional toll. That’s where support groups—especially peer-led ones—make a difference. They provide something the medical…
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What is a CES Study?
When people in research circles talk about a “CES study,” they often mean a Comparative Effectiveness Study. This is a type of research that asks a question that’s simple but powerful: Which treatment works better for real people, in real life? Unlike a traditional clinical trial that usually tests one drug against a placebo, a…
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Building Bridges: How Patient Advocate Organizations and Researchers Can Work Together
For too long, clinical trials and research studies have been designed in ways that don’t always reflect the realities of the people most affected—the patients themselves. That’s starting to change, but it won’t happen fully unless we strengthen the partnership between patient advocate organizations and researchers. I’ve seen both sides: the passion and rigor that…
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PCORnet: What It Is and Why It Matters for People Living with Chronic Pain
When we talk about research, too often it feels like something far away—done by scientists in locked labs, with little connection to what we live with every day. That’s why I want to share something important: PCORnet®, the Patient-Centered Clinical Research Network. What Is PCORnet? PCORnet was built by the Patient-Centered Outcomes Research Institute (PCORI).…