Stay Informed — Research Update

Who Sets the Standard? Compensation for Lived Experience

There is no national rule for paying PWLE advisors and partners. Here’s where the standards actually come from — and where the leverage sits.

One of the most common questions advocates ask — and one of the hardest to answer cleanly — is simply: am I supposed to be paid for this, and is there a rule that says how much?

It feels like there should be a national standard. There isn’t.

Understanding why not, and who does set the expectations in practice, is genuinely useful. It tells you where the leverage is when you negotiate.

The short answer: no national standard

In the United States, there is no single law or federal authority that requires people with lived experience to be paid for advisory or partnership roles, or that fixes the amount.

This isn’t an oversight so much as a structural fact. The U.S. has no single body that funds or governs all health research, so there is no one positioned to set a binding, field-wide rate. Instead, the expectation is set in pieces — by funders, by institutions, and by individual projects.

Who actually sets it — three levels

1. The funder

Whoever pays for the work sets the expectations for it. PCORI (the Patient-Centered Outcomes Research Institute) is the closest thing the U.S. has to a standard-setter.

Its Compensation Framework expects research partners to be paid for their expertise, time, and contributions, and directs researchers to consider the intensity of partner involvement — the activities, and the roles and responsibilities of the people doing them. But PCORI deliberately stops short of a fixed number. It expects partners to be compensated, yet leaves the nature and amount to be negotiated and justified in each study’s budget. And it only carries weight for the research PCORI funds.

That 2015 framework no longer stands alone. PCORI’s Foundational Expectations for Partnerships in Research now includes a component on dedicating funds for engagement and partner compensation, which says compensation should reflect a partner’s time, skills, expertise, responsibilities, and project role, with out-of-pocket expenses reimbursed on top. It also tells teams to budget for the things that make participation possible at all, and to name the barriers a partner might face and fund the fix. If you are citing PCORI in a budget conversation, cite both.

Beyond PCORI, foundations, pharmaceutical sponsors, and conference organizers each set their own. Some are generous. Many have no policy at all until someone asks.

2. The institution and its IRB

The university or medical center running a study — through its Institutional Review Board — approves how much participants are paid and how.

NIH fits here too, but in a narrower way than people assume. NIH has detailed policies for paying research participants in the studies it runs at its own Clinical Center: compensation for time and for research inconveniences, plus travel and lodging. Those policies govern NIH’s own house. They are not a national rate card for outside institutions. For NIH-funded research done elsewhere, participant payment is generally left to the local IRB and investigator to set and justify.

What changed in December 2025 is the advisor-and-partner side. NIH accepted the ENGAGE recommendations, which set an agency expectation that everyone must be offered fair and equitable compensation for their contributions, including community partners — and that research teams should work with partners so that payment does not jeopardize their eligibility for other benefits, such as disability.

That is an expectation, not a rate. NIH still publishes no number. But an advocate who is told that engagement funding is not standard practice at NIH is now working from an out-of-date map.

3. The project

In the end, the actual number is set where the work happens — negotiated between the team and the partners, and written into the budget justification.

This is where an informed advocate has the most influence, and why knowing the frameworks above matters. They give you a reference point to point to.

One concrete thing to ask for by name: how you are classified in the budget. PCORI’s own guidance says a partner with a highly active role in carrying out the work may be listed and compensated as a co-investigator, while a partner serving in an advisory capacity may be listed as a consultant. Those are different lines with different rates. Ask which one you are on, and ask early — the classification is much easier to set than to change.

One more thing worth saying plainly. The compensation conversation is supposed to include you. Not happen about you, and not arrive as a number already fixed. You are allowed to ask what the rate is and to say that it is too low. You are allowed to ask which line of the budget you sit on, and what it would take to move you to a different one. None of that is rude. It is what any other expert in the room would do. Knowing where the standards come from is not background reading. It is the thing that lets you have that conversation as a peer.

“The number is set where the work happens. That’s where your leverage is.”

Why advocates cite the UK

Because no U.S. body publishes firm figures, advocates worldwide reach for the UK’s NIHR (National Institute for Health and Care Research), one of the few bodies anywhere that sets specific rates.

NIHR raised its rates by 10% on December 16, 2025. Public-involvement payments now run from £13.80 (about $19) for a short task to £495 (about $670) for the most involved committee days, with an hourly rate of £27.50 (about $37), up from £25 (about $34).

The dollar figures are approximate, converted at roughly $1.35 to the pound in August 2026. The exchange rate drifts; the pound figures don’t. If you are quoting a number in a budget conversation, quote the pound figure and convert it fresh.

NIHR says rates will be reviewed every three years, so this set should hold for a while — useful, because a number you can cite for three years is worth more than a number that moves every quarter.

Read the fine print, though, because it is familiar. NIHR asked grant holders to absorb the increase from within existing funding envelopes. No new money came with it. And NIHR’s own announcement says its funded researchers are expected to use the new rate, though it cannot be guaranteed.

The country we hold up as the model raised the rate and did not fund it.

NIHR has no force in the U.S. But it gives advocates a concrete, defensible number to anchor a conversation, and the anchor still works.

What’s changing

A workgroup of PCORI’s Patient Engagement Advisory Panel took up a review of the Compensation Framework, prompted partly by the spread of newer compensation frameworks and calculators across the field since 2015. As of August 2026, no revised framework has been published.

So the honest status is this. The closest thing we have to a U.S. standard is a decade-old document that has been under review, with patient and PWLE input in the room for that review. Whether it comes out changed, and when, is not yet on the public record.

For those of us who believe lived experience is professional expertise, that is still a window. Windows close.

For the researcher reading this

None of the above tells you what to pay. That is the honest problem, and it is not your fault.

What it does tell you is when to decide. Every framework here — PCORI’s, ENGAGE’s — puts the compensation conversation before the work begins, not in the budget revision after the award. If you are reading this and a partner is already contributing, the useful question is not what the going rate is. It is whether there is a line for them at all, and what happens to their disability benefits if you fill it.

And you may have to make the case upstream before you can make the offer. Department leadership and a budget office that has never seen a partner on a personnel line are often where a fair rate actually dies — not at the point of asking. If that is your situation, the frameworks above are as much for you as for us. PCORI and ENGAGE are both citable inside your own institution.

Ask us. We have usually thought about it longer than you have.

The bottom line

No national standard. Three real levels where it’s actually set — funder, institution and IRB, and project.

PCORI as the most influential U.S. reference. NIHR as the most-cited number. NIH now carrying an accepted expectation without a rate attached.

Knowing the landscape is the first step to changing it.

— Tom