Stay Engaged — Open Call
A Table You Can Actually Sit At: The ENCompaSS Trial
A PCORI-funded study of chronic back pain care is built around Veterans — and it’s looking for more lived experience to help shape it.
I am not a neutral party here, and you should know that first rather than last.
I am a paid member of the ENCompaSS Community Consultation Studio — the standing advisory group described below. The study team is looking for more Veterans with lived experience to help shape this work, and I am using these pages to help them find you. That is what this piece is.
I also serve on a PCORI Patient Engagement Advisory Panel, and ENCompaSS is PCORI-funded. I received nothing for writing this. Weigh all of it as you read.
For a lot of us, the hardest part of chronic low back pain isn’t only the pain — it’s finding care that fits your life, and knowing which options are even on the table. A study called ENCompaSS is trying to change that, and it’s doing it the way this newsletter cares about most: by building the research around the people who live the condition.
What the study is testing
ENCompaSS is testing a navigated, patient-centered model of care for Veterans living with chronic low back pain. It combines education, personalized guidance, and ongoing support over time. Instead of leaving people to sort through treatment options alone, the study pairs each participant with a care navigator — someone who helps explain the non-drug options on offer, connects people to services, and supports them in making their own informed decisions. Exercise and physical therapy are part of the picture, alongside other supportive approaches. The question the study is asking is a practical one: does this kind of navigated support actually improve how people function day to day, and how they feel overall?
Who is at the table
The work is led by researchers at Duke University and the Department of Veterans Affairs, and funded by the Patient-Centered Outcomes Research Institute (PCORI). What makes it worth a place in these pages is how it treats lived experience — not as a box to check at the end, but as something shaping the study from the inside. Veterans with chronic back pain help shape the study materials and help identify which outcomes actually matter. A standing advisory group — the Community Consultation Studio, which I sit on — brings together Veterans, caregivers, pain navigators, and primary care physicians to keep the trial anchored to real-world experience rather than assumptions about it.
Why it earns a place here
It’s one thing to read that researchers should partner with people from the start; it’s another to see a funded trial actually seat Veterans at the table where materials get written and outcomes get chosen. Over the next several years, ENCompaSS will evaluate whether this navigated approach improves daily functioning and well-being for Veterans across VA health systems.
If you’re a Veteran living with low back pain and you’d like to share your experience to help inform ENCompaSS, the study team wants to hear from you. Reach Renee Leverty at renee.leverty@duke.edu. This is a real chance to put lived experience to work inside a multi-site VA trial — exactly the kind of table this newsletter exists to point you toward.
— Tom
Editor’s note: the editor’s paid role with the ENCompaSS Community Consultation Studio, and his seat on a PCORI Patient Engagement Advisory Panel, are disclosed in full at the top of this piece. PWLE Voices carries no advertising and was not paid to publish it.
PWLE Voices is an independent community newsletter. It is not affiliated with, endorsed by, or speaking for PCORI, the Department of Veterans Affairs, the NIH, or any federal agency. References to ENCompaSS and its funders are provided for the information of readers. Recruitment details are current as of publication; contact the study team to confirm.