‹ 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 from a working group called ENGAGE — short for Engaging the Public as Partners in Clinical Research. On the surface, it is a 40-some-page document written for NIH leadership and the research community. Read closely, though, it is also a tool for advocates. It names the standard a researcher should be held to. It names the supports a community partner should expect. And it puts language in our hands — language that comes with the NIH’s official imprimatur.

This article translates the report from researcher-speak into advocate-speak. It’s not a summary; it’s a working tool. Bring it with you the next time someone asks you to “sit on a committee.”

The one sentence to remember

If you read nothing else from ENGAGE, read this. It’s the goal the working group set for the NIH, and it’s the cleanest statement we have of what we are asking for when we show up:

Read that twice. “Influence the agenda and direction of” is doing a lot of work. The report is not asking researchers to consult us after they’ve already written the grant. It’s asking them to let us shape what the question is in the first place. That’s the bar.

Four recommendations, in plain English

ENGAGE makes four “bold recommendations” to NIH. Each one is a lever an advocate can pull when the conversation in a room starts drifting toward tokenism. Here is how to read them:

NIH should require and fund engagement.

Translation: the money and the training have to be there. If a researcher invites you to partner but can’t tell you where the funding for your time will come from, or whether the team has had engagement training, ENGAGE is on your side when you push back.

NIH should make bi-directional partnerships standard practice.

Translation: this should not depend on whether a single researcher is enlightened. The expectation is system-wide — bi-directional partnerships, supported by funding opportunities, an NIH-wide resource repository, and peer review that asks whether a research organization actually has the engagement infrastructure it claims to have.

NIH should get community input on its own priorities.

Translation: NIH itself should be asking communities what to study, not just funding individual studies that ask. ENGAGE specifically calls out that each NIH Institute, Center, or Office should integrate community input into its strategic plans. That’s a lever for advocates working at the policy and priority-setting level.

NIH should keep improving the methods.

Translation: this isn’t “do it once and call it done.” NIH is being asked to operationalize the Framework, develop metrics, hold researchers accountable, and fund larger-scale studies of what engagement methods actually work. As advocates, that means our experience should be feeding back into how the practice evolves.

The five-stage Framework, and where you fit

The heart of the report is a Framework for Clinical Research Engagement organized around the clinical research lifecycle. For each stage, ENGAGE names an engagement objective and the action steps that go with it. The short version, with what to listen for as an advocate:

Identify Health Needs.

Are researchers asking the community what its health needs are, on a continuing basis — or only when a grant deadline forces them to?

Set the Research Question.

Is the research question the result of a shared priority-setting process, or did it arrive pre-cooked?

Plan the Research.

Have roles, responsibilities, decision-making processes, and compensation been agreed to before the design work begins? Has training been offered to both sides?

Carry Out the Research.

Are study modifications informed by community input as obstacles come up? Is there co-interpretation of results, not just co-collection?

Share the Findings.

Are results being returned to the people and community who took part — not just to a journal? Through channels they actually use?

ENGAGE is explicit that engagement is not one-size-fits-all. Some PWLE want to be in every research team meeting; others prefer occasional check-in calls and weekly email updates. Both are legitimate. What matters, the report says, is that community priorities, perspectives, and expertise are integrated into the design, execution, interpretation, and dissemination of the work.

What the report says about compensation

This part deserves its own subhead, because it is the part advocates most often have to fight for. ENGAGE is direct: clinical research engagement requires time and expertise, and “everyone must be offered fair and equitable compensation for their contributions, including community partners.”

The report acknowledges that compensation can take different forms — monetary payment, access to university resources, professional opportunities — and that the type and amount should match the partner’s role and preferences. For PWLE on disability or other means-tested benefits, ENGAGE specifically notes that monetary compensation should be structured so it does not jeopardize those benefits.

It also acknowledges the awkward funding gap at the front end: most current NIH funding mechanisms don’t pay for community partners until after a grant is awarded, even though the most important engagement work happens before the application is written. The report points to two workarounds — internal organizational funds and research planning grants — and asks NIH to do better.

How to actually use this report

Three concrete ways:

Use it as a checklist.

If you are invited to advise on a study, ask which stage of the ENGAGE Framework the team thinks you’re being brought in for. If it’s only Stage 4 or 5 (carry out the research, share the findings), ask why the earlier stages happened without community input — and whether there’s still time to widen the partnership.

Use it to negotiate.

When researchers ask you to volunteer your time, refer them to Section IV and the discussion of compensation. “ENGAGE says” is a sentence that lands.

Use it to find your way into bigger conversations.

ENGAGE is going to shape how NIH writes funding announcements and reviews proposals over the next several years. Knowing what’s in it lets you speak at NIH listening sessions, public meetings, and Institute priority-setting forums with the same vocabulary they’re using.

Where it falls short — and where we come in

ENGAGE is the best statement of intent we’ve seen from NIH on engagement. It is not the same thing as practice. The report itself notes that some planned Community Conversations were canceled, that funding models still make pre-award engagement difficult, and that researchers and community members both vary widely in their understanding of what good engagement looks like.

That gap — between the framework on the page and the framework in the room — is where PWLE advocates do our work. The report gives us the language. The community gives us each other. The work, as always, is ours to do.

“Bring the framework with you. Then make sure the room is using it.”

Sources: NIH Office of Science Policy, Novel and Exceptional Technology and Research Advisory Committee: A Report of the Engaging the Public as Partners in Clinical Research (ENGAGE) Working Group, November 2025. Specific references: Executive Summary (pp. 3–6); Section IV, Framework for Clinical Research Engagement (pp. 18–28); Section V, Recommendations to the NIH (pp. 29–32).