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 table came butterflies, lions, turtles, bees. When my turn arrived I said phoenix.
I said it because it is the truth of my life. After my involuntary separation from active duty I crashed — there is no other word for it — and I rose up from the ashes because of my faith and because of Marianne’s love and steady support. That is the foundation underneath everything I do now in patient advocacy. Saying it out loud at the start of the day, in front of researchers and clinicians and fellow patient advocates, set a tone I carried through every session that followed.
What I want to share here is partly the substance of the meeting and partly something else — the sense that this work has reached a different phase, and that more of us belong inside it.
What we discussed
The morning anchor was trust and trustworthiness in comparative effectiveness research — how researchers build durable partnerships with the communities they study, what makes those partnerships break, and what it takes to repair them. PCORI shared findings from interviews with 37 researchers and partners across 17 projects, and a conceptual model that maps trust across individual, interpersonal, project, and system levels.
What struck me is how much the framing centers on trust as something researchers build with communities — downward, outward. That is right and necessary. It is also incomplete. Advisory panels, including the one I serve on, are themselves community partners to the funders we serve. The same Foundational Expectations PCORI asks of its awardees — representative involvement, early and ongoing engagement, fair compensation, capacity-building, meaningful inclusion in decisions — apply just as much in the upward direction. Modeling that consistency is itself a trust signal.
Trust can also be broken by funder-driven decisions, not only by researcher behavior. A framework that names this is more honest, and more useful.
The afternoon brought a draft Compensation Framework Update. The hardest piece of compensation work, and the one that comes up again and again in our communities, is the interaction between stipends and public benefits — Medicaid, SSI, SNAP thresholds that compensation can inadvertently cross, harming the partners it was meant to support. The framework acknowledges this; the field is still working out how to make the acknowledgement operational.
The caregiving session was the most substantive of the day. PCORI is developing a Caregiver Impacts and Economic Stressors landscape — a structured catalog of the costs caregivers carry that traditional research often misses. Direct costs, indirect costs, intangible costs, and the contexts that shape all of them. The document explicitly invited pressure-testing, and I offered some. “Lost care” — when a patient becomes a caregiver and loses access to their own care — reads as one item in the list. It is closer to a multiplier that cascades through every other category. Concurrent caregiving, the sandwich generation, geography, and caregiver age are missing from the contexts. The framework is a strong start, and it will be stronger with those additions.
Where we did not all agree
Not every observation I offered landed where I hoped, and not every observation other panelists offered landed with me. There were moments of real disagreement around the table — about how trust should be measured, about how compensation should be structured, about which gaps in the caregiving framework matter most. What I want to name is what happened around the disagreement itself: a steady, repeated acknowledgment that each person had the right to their own view, and that the panel was stronger for hearing positions that did not converge.
That sounds small. It is not. A research advisory panel that cannot tolerate disagreement collapses into consensus theater, and consensus theater produces frameworks that do not survive contact with the real world. The willingness to sit with unresolved difference — and to keep working — is itself a sign of a panel that is doing its job.
What the day was really about
The deeper through-line of the day was a shift the field has been making for some time. Patient engagement is in a maturation phase. The early years of this work were about getting patients into the room. The current phase is about what happens when patients are in the room — whether the engagement structures themselves are equitable, whether compensation reaches the people most burdened by participation, whether the trust we build can survive funder-driven changes, whether the burdens we ask caregivers to carry are ones our own infrastructure helps create.
That is harder work. It requires looking at the frameworks honestly, including the ones we have built ourselves. The fact that PCORI is doing that, in public, in front of a panel that includes people willing to push back, is the part of today worth naming.
Returning home
I think often about the road from active-duty separation to this conference table. There were stretches when I could not have imagined walking into a room of researchers and feeling like I belonged. The pain I experience did not go away. What changed is that I learned the pain is also evidence — the kind of evidence that improves research when researchers are willing to listen and patients are willing to speak.
If you are someone living with a chronic condition and you have ever wondered whether your story has a place in clinical research, the honest answer is yes. The frameworks being built right now will be better with more of us inside them.
I will be writing more here as PCORI’s materials are published and as the next round of work begins. There is a lot to follow, and the field is moving faster than the public-facing summaries always show.
Phoenix was the right word this morning. I think it might be the right word for this whole field.