Stay Empowered — Tools & Resources
Finding the Real Ones
Trusted messengers can help a clinical trial at every phase — if researchers and people with lived experience can find each other first.
The gap I describe at the end of this article is one I am trying to close. PWLE Voices is developing an advisor registry — a way for researchers and people with lived experience (PWLE) to find each other. It is not launched or funded, and it may never be either.
I am telling you because I am making an argument that points at my own unfinished work. Weigh it accordingly.
Every community already knows who its trusted messengers are.
That gap is the whole problem, and this article is about closing it from both directions. Our PWLE Voices community now includes researchers alongside people with lived experience, which means both chairs at the table are reading the same page. Good. This is work neither chair can do alone.
What a trusted messenger is — and is not
A trusted messenger is the person a community actually turns to when a health question gets real. Not the person with the biggest title. Not the official spokesperson.
It is the front-desk person who has been there twenty years. It is the forum moderator everyone forwards articles to. On my end, for twenty-seven years in Los Angeles, it has been a Tuesday night.
These people have pre-verified themselves. Nobody keeps showing up for a community, year after year, without the community deciding they belong.
They belong in every phase, not just the last one
We usually talk about trusted messengers at the end of a study, carrying results home. That sells them short. There is a seat for them at every phase of a trial.
At the design table, a trusted messenger knows what the community actually wants answered — and what burden a protocol would place on real lives, because they have heard about those lives every week for years.
At recruitment, the difference is simple. An invitation from a stranger is a flyer. An invitation from a trusted messenger is a conversation.
During the study, they are retention. When a participant gets tired or frightened halfway through, the call they make is rarely to the study coordinator.
And at the end, they are the last mile. A finding that arrives through a trusted voice, with its caveats intact, gets heard. The same finding in a press release gets scrolled past.
For researchers: ask the one question
You do not identify trusted messengers. You ask the community to identify them for you.
One question does most of the work: when you need to understand something about your health, who do you actually go to? Ask it in listening sessions. Ask it of the participants already in your study. Ask it of the people who said no. Ask enough people and the same names start recurring.
Work through the organizations that already hold trust — advocacy groups, community organizations, faith networks, community health centers. But learn the difference between a gatekeeper and a messenger. The person an organization officially puts forward is not always the person the community actually calls, and only time on the ground tells them apart.
And start before you need anything. The team that shows up between studies, listening and asking for nothing, has earned the right to ask for something later. The team that cold-calls the month the results drop has confused a bank with a vending machine.
You are not out ahead of your funder on this
In November 2025 the National Institutes of Health (NIH) published the report of its ENGAGE working group — Engaging the Public as Partners in Clinical Research. Its working group drew five themes from public input, and trusted voices is one of them. The report also sets the expectation that community partners be fairly compensated, including partners whose disability or other means-tested benefits could be put at risk by how payment is structured. And it names tokenism as the thing to avoid, in those words.
This is not a report sitting on a shelf. In December 2025 the NIH Director endorsed the working group’s recommendations and said NIH would begin implementing the roadmap in 2026. The report also states that community-based organizations can help a research team identify and partner with trusted voices, who in turn connect others willing to work with researchers. That is this article, in NIH’s own words. If you have been waiting for something to point at when you write this work into a budget, it arrived, it is free, and it is in the public domain.
Community health workers and promotoras · Peer supporters and patient navigators · Support group facilitators and online forum moderators · Faith leaders and congregation health ministries · Barbers, stylists, and other gathering-place figures · Elders and tribal leaders in Indigenous communities · Veteran peer networks · Care partners and family caregivers, the translators inside the household · Community leaders, bloggers, and newsletter writers who live with the condition · Bilingual community brokers and interpreters · Long-tenured front-desk and clinic staff
Pharmacists belong on this list, with a caveat worth knowing. In Gallup’s December 2025 poll they were rated highly by 53 percent of Americans — still one of only four professions a majority rates positively, and also the lowest rating Gallup has ever recorded for pharmacists, down from 71 percent in 2020.
Neighborhood clinicians belong too: the longtime primary care doctor, and the school nurse. Nurses have topped that same Gallup ranking every year but one since 1999.
This is a starting map, not a substitute for asking. Every community’s list is different, and the one question still does the work.
For PWLE: being trusted is not the same as being findable
Most of us are invisible from where the researchers sit. That is fixable.
Get on the lists that exist. Advocacy organizations keep rosters of people who have already said yes to this work. Ambassador programs, review panels, and communities of practice are where researchers look first, because they are the only places there are to look. If your condition has a national organization, make sure it knows you exist and knows what you can do.
Say what you do somewhere a stranger can find it. If you facilitate a group or translate research for your community, put that in a profile, a byline, a website — anywhere with a door.
And when a research team does come asking, ask back. Which phase do you want me in? What preparation and materials will you provide? What is the compensation? You are not volunteering a favor. You are providing expertise the study cannot finish without.
Until there is a shared list
Follow either path far enough and you hit the same wall.
Not for want of anything at all. ResearchMatch is a national volunteer registry, run through the NIH Clinical and Translational Science Award program, with a network of community collaborator organizations behind it. The Trial Innovation Network and its Recruitment Innovation Center will consult with a study team on recruitment. Community Engagement Studios will convene community members to advise a project for an afternoon.
Every one of those is built to find participants, or to rent a room full of advice for a day. None of them is a standing list of the people a community actually calls. Every team still redraws that map by hand. Every messenger still waits to be stumbled upon.
Some of us are working on that. Until it exists, the map is us.
So ask the one question. Raise your hand where it can be seen.
The list is real. It lives in the community.
— Tom
- NIH Office of Science Policy. Report of the Engaging the Public as Partners in Clinical Research (ENGAGE) Working Group of the Novel and Exceptional Technology and Research Advisory Committee, November 2025. Source for the five themes drawn from public input — the second is relying on trusted voices to build relationships — for the compensation expectation including partners on means-tested benefits, for the naming of tokenism, and for the guidance that community-based organizations can help identify trusted voices. The NIH Director endorsed the recommendations in December 2025 and stated that implementation would begin in 2026. Free to download at osp.od.nih.gov; the initiative’s own site is partnersinresearch.nih.gov
- Gallup. “Nurses Continue to Lead in Honesty and Ethics Ratings,” published January 12, 2026. Poll conducted December 1–15, 2025 with 1,016 U.S. adults; margin of error ±4.0 percentage points. Source for the nursing streak, the pharmacist figures, and the finding that seven of the 21 professions measured reached new or tied record lows. Gallup updates this annually — check the current year before citing these numbers again.
- ResearchMatch (researchmatch.org), a volunteer registry developed and funded through the NIH Clinical and Translational Science Award program. Its community collaborator network is described on its own site; that count is self-reported and I have not independently verified it, so no number appears above.
- Trial Innovation Network and Recruitment Innovation Center, also under the NIH Clinical and Translational Science Award program. Described here as recruitment consultation, which is what their published materials describe.
- Community Engagement Studio model. See Joosten and colleagues, and the subsequent literature on studios in the Journal of Clinical and Translational Science, for the consultative structure summarized above.
PWLE Voices carries no advertising and takes no money from anyone. Contributors are offered the whole issue before it publishes, with the chance to change anything in it.
The views, positions, and recommendations expressed in this article 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.