A Note from the Editor
Two things that shouldn’t wait.
Why there is an issue in August at all.
PWLE Voices publishes quarterly, and this September it publishes as a six-issue run for Pain Awareness Month. This edition is not part of that run and takes no number in it. It exists because two things needed to happen now rather than a month from now.
The first is a program. The Better Together Recognitions open for nominations this month — and a program that asks a community to name what it values shouldn’t be introduced in the middle of a six-part argument about something else. It needed its own front page.
The second is a person. Sara Skelton receives the first Stewardship Award today, at the NIH HEAL National Pain K12 symposium — a date set by someone else’s calendar. Recognition that arrives after the room has emptied is a press release. Recognition that arrives while the people who benefit from the work are still sitting there is something else.
If you are new here, this is a reasonable place to start. It explains what a PWLE is, introduces the program, and points you to the one long article it carries. The September run begins next month.
— Tom
Foundations
What Is a PWLE?
Four letters, one role in research — and how the NIH’s ENGAGE report describes the work you would be doing.
Person — or People — With Lived Experience. It is not a synonym for patient, and it is not a job title. It names a role: the person in a research conversation whose knowledge comes from living the condition rather than from studying it.
Here is the useful thing to know. The ENGAGE report never uses the term PWLE. The acronym came from us. What the report does define — carefully, and for the first time at this level — is the work itself:
Clinical research engagement occurs when people, groups of individuals, communities, and/or organizations partner with researchers to plan, design, and conduct research so that the research and its outcomes are meaningful, actionable, or support understanding of disease for those who could benefit from the research.
— NIH ENGAGE Working Group report, November 2025
Read that again with yourself in it. Plan, design, and conduct — not review, not comment on, not approve at the end. The report names four key partners in that work: community, researchers, organizations, and funders. A PWLE sits in the first of those. And it defines community broadly — people who share a common bond, whether that is a place, an age, a condition, or a role such as caregiver.
The report sets a goal to match: for people and communities to influence the agenda and direction of research, as well as have meaningful input into it. Its vision is a future where this is standard practice rather than the exception.
If you live with a pain condition and you have ever thought that what you know might be useful to the people studying it, you are the audience for this newsletter. That is the whole membership requirement.
The full report is free and in the public domain: A Report of the Engaging the Public as Partners in Clinical Research (ENGAGE) Working Group, NIH Novel and Exceptional Technology and Research Advisory Committee, November 2025. Available at partnersinresearch.nih.gov and osp.od.nih.gov. The working group was co-chaired by Christin Veasley of the Chronic Pain Research Alliance.
A Tool You Can Use Today
The PWLE Patient Engagement Glossary
205 entries and 13 red flag phrases, in one alphabetical list — built to be searched while someone is still talking.
Research rooms run on vocabulary. Some of it is genuinely technical. Some of it sounds like an invitation and isn’t. Asking what a term means in the middle of a meeting is a reasonable thing to do and almost nobody does it, because the cost of looking uninformed feels higher than the cost of nodding along.
So we built the list. It is deliberately one alphabetical run rather than tidy categories, because you are not browsing it — you are hitting Ctrl+F while a conversation moves on without you. Each entry carries a tag for what kind of term it is, a short definition, and a reference where one is useful.
The part to read first is at the bottom: the red flag phrases. Thirteen things that get said in research meetings which sound collaborative and are not. If you read nothing else, read those.
It is free to use, print, and share. And it grows from what readers send — if you have met a term that belongs in it, there is a form at the foot of the page to suggest one.
The First Stewardship Award
Somebody Is Making This Work
Sara Skelton runs the national training programs building the next generation of pain researchers — and she was a study participant before she ever worked in research.
Sara manages the NIH HEAL National Pain K12 career development program at the University of Michigan, and the postdoctoral training program alongside it. If you have sat on a PWLE panel for a K12 scholar, been reimbursed for a meeting, or found a conference dinner your wheelchair could actually get into, there is a reasonable chance she is the reason.
She came to research administration by way of a Panera, a casino floor, and twelve-hour shifts in an emergency room. She was a participant in one of her own center’s studies before she was hired there — and she keeps that quiet at work, on purpose, for reasons every PWLE will recognize. When the program’s lived-experience mentoring turned out to be uneven, she staffed the panel that replaced it. When strangers write to a research center asking for care it cannot provide, she answers them, with a resource list she built herself as a master’s capstone.
None of that is in her job description. That is exactly why this award exists.
The Stewardship Award recognizes the work that keeps everything else running and never carries a byline. Sara is its first recipient, and she receives it today at the symposium. Recognition is not compensation, and this newsletter will keep saying so — a certificate is a piece of paper. What it does is put on the record what a community decided was worth noticing.
Where we sit: our editor serves as a patient advisor in the HEAL K12 program Sara manages, and co-chairs the recognition program making this award. Full disclosure runs at the top of the article.
Better Together Recognitions
Four Chairs, Four Recognitions
A recognition program for the people who make real partnership possible — on every side of the table.
Research partnership gets talked about as a virtue and measured as a checkbox. Somewhere in between are the people actually doing it: the person with lived experience who kept showing up to a study team that wasn’t sure what to do with her; the researcher who rebuilt a protocol after a community meeting told him it was wrong; the ally who held a door open; the person in the chair beside the patient who made the appointment possible at all.
This program puts that work on the record. One recognition for each of those seats. Nominations run August 10 through October 31, and recipients are announced November 30.
- The Expertise of Experience — for a person with lived experience.
- The True Partner — for a researcher.
- The Open Door — for an advocate or ally.
- The Chair Beside — for a caregiver.
Who decides. A rotating panel of people with lived experience selects the recipients. The co-chairs — Laura VanAntwerp and the editor — convene the process and issue what the panel decides. They do not choose. Where either co-chair has a working relationship with a nominee, that co-chair steps out on receipt of the nomination, before deliberation rather than during it.
That structure is the point rather than a formality. This publication argues that a seat at the table is not the same as a vote. A recognition program run by the same people who run the newsletter would be a seat. Putting the decision with a PWLE panel is the vote.
How this first cycle works. Sara Skelton’s Stewardship Award did not come from open nominations. It was issued under a founding-editor provision, as a deliberate exception, because a program built to make invisible contribution visible should not hold its first act of recognition for a year while its own machinery is assembled. The four recognitions above are panel-decided, and nothing about this issuance changes that rule. You are entitled to know which is which.
→ The full program: criteria, selection process, and how recusal works
Open Call — Nominations
Name Someone
The nomination period runs August 10 through October 31, 2026. Recipients are announced November 30.
- Anyone may nominate, including yourself. Self-nominations are weighed by the panel on the same terms as any other.
- Nominations are confidential. We will not tell a nominee they were nominated unless they are selected.
- You do not need to write well. If you saw work that mattered, that is enough reason to fill it out.
- Prefer not to use a form? Email your answers to the same questions to editorpwlevoices@gmail.com, or ask a co-chair to take your nomination by phone. A paper form is available on request.
The form is at chronicpainla.com/nominate/ — if you are ready before the tenth, go ahead; early nominations are held and reviewed with all the rest. Any category without a nomination the panel considers worthy stays open, and its nominations carry forward to the next cycle.
Who have you never seen thanked?
A recognition program is only as good as the community’s memory. So we’re asking you to use yours.
Most of what makes partnership work is invisible by design. The coordinator who called back. The researcher who changed the protocol. The person who sat in the chair beside you at every appointment. None of it gets applauded, and most of it never gets written down anywhere.
So, one question this edition:
Who is the person whose work you have benefited from and never seen anyone thank?
You can tell us in a nomination at chronicpainla.com/nominate/, or just write to us at editorpwlevoices@gmail.com. Not every answer has to become an award. Some of them just deserve to be on the record.
— Tom
We want PWLE Voices to work for every member of our community — however you read, listen, or take in information. If the current format is hard for you, or a different one would help — larger text, an audio version you can listen to, plain-language summaries, anything — we want to know.
Tell us what would make this easier to use: editorpwlevoices@gmail.com
— Tom
This one did not go to the Editorial Advisory Board. It was built quickly, to a date set by someone else’s calendar, and there was not time to put it in front of the board the way the numbered issues are. That is a departure from how PWLE Voices normally works, and you should know it rather than assume it.
What that means in practice: the framing, the emphasis, and every judgment call in these pages are mine alone. They have not been tested against the people whose job it is to tell me when I have got something wrong. Any errors in this edition are mine, and so is the responsibility for them.
The two people written about here did see their own material. Sara Skelton read her article before publication with the authority to change it, not merely to approve it. Everyone named in it was asked. That part of our practice held.
If you find a mistake — a name, a date, a fact, or something that simply reads wrong — tell me and I will correct it and say so: editorpwlevoices@gmail.com. Corrections are published, not quietly patched.
— Tom
The views, positions, and recommendations expressed in this edition are based on my personal experiences. They are solely my own and do not necessarily reflect the views, policies, or positions of the American Chronic Pain Association (ACPA), the Patient-Centered Outcomes Research Institute (PCORI), or any federal program or committee on which I serve. AI was used for research, editing, and organizing; final text is my own.
PWLE Voices is a community publication. Nothing in it is medical, legal, or financial advice. Descriptions of programs, funding opportunities, and deadlines are accurate to the best of our knowledge at the time of publication and can change without notice — verify anything you intend to act on with the organization running it.
Better Together Recognitions are non-monetary. Recognition is not a substitute for fair compensation, and this publication does not accept payment for coverage or for recognition of any kind.