Stay Engaged · Open Calls
Ask in the Spring
Four places your experience is being asked for. One closes next month, one opens in five weeks, one is open every day of the year, and one you have to remember in April.
I serve on PCORI’s Patient Engagement Advisory Panel and as a PCORI Merit Reviewer. Both pay an honorarium. I am also a PCORI Ambassador, which is unpaid, and a paid member of the Community Consultation Studio for ENCompaSS, a PCORI-funded trial for veterans. I serve on the advisory committee for an NIH HEAL K12 program, which pays an honorarium for each meeting. And I am a patient advisor on a University of Michigan grant proposal, still pending, that would pay me if it is funded.
Two of the four openings below are PCORI’s, and one is NIH’s. I list them because they are real and open to any person with lived experience, not because of those roles. Weigh what follows accordingly.
The companion piece in this issue is about how a month gets made, and it ends on a practical note: the letter that works is the one sent in the spring.
That is true of nearly everything on this list.
Three of these four openings run on a calendar somebody else set. The fourth one you have to put in your own calendar, months ahead, or the window closes without you noticing.
1. Tell NIH what you want to hear after a study ends
Closes October 26, 2026. Anonymous is allowed.
On August 27, NIH released a draft policy that would require researchers to share summary results, in plain language, with the people who took part — for clinical trials, no later than a year after the study’s primary completion date.
Three of the questions in the request for information are addressed to participants rather than to researchers. What do you find valuable in a summary of results, and what beyond the headline finding matters to you. How would you want to receive it. What worries you about receiving it, and what would ease that worry.
Those are not questions a methodologist can answer for you.
A paragraph is a comment. You may submit anonymously, or with your name if you want it on the record. Responses may be posted publicly afterward without redaction, so write what you are willing to have read.
Comment on the draft policy →
Notice NOT-OD-26-113. Responses due October 26, 2026.
2. Apply to a PCORI advisory panel
Opens in November. Five weeks from this issue.
PCORI’s advisory panels shape funding priorities and engagement standards. One of them is the Patient Engagement Advisory Panel. Applications are accepted between November and March — last cycle the deadline was March 7 — and the Board approves new panelists at its public meeting the following September.
So the calendar runs long. You apply in the winter and you learn in the autumn.
One thing worth knowing that neither recruitment page puts up front: advisory panel meetings are hybrid or virtual-only. If travel is the thing that has kept you from saying yes to this kind of work, this is the door to try first.
And if you have applied before and were not selected, PCORI says plainly that it encourages past applicants to reapply. The volume is high. A no is not a verdict.
See which panels are opening →
3. Become a PCORI merit reviewer
Open every day of the year. You hear back in about a week.
Merit reviewers sit on the panels that score research applications, with weight equal to the scientists in the room. Reviewers are trained. The work is compensated. Applications are accepted year-round.
Two conditions to know before you apply. The panel meeting for merit review is in person — that is the difference from the advisory panels above — and PCORI makes accommodations where a disability affects your ability to take part. Ask for what you need rather than deciding in advance that you cannot manage it. And applicants must live in North America.
If you want to influence what gets funded rather than what gets published, this is the door.
Apply to be a merit reviewer →
4. Ask your own state for the month
No deadline. Which is exactly the problem.
This one comes straight out of the other article in this issue.
September belongs to pain because people asked their state legislatures and their governors for it, one at a time, and kept asking. California has recognized it repeatedly since at least 2010. Louisiana did it twice. Michigan’s governor proclaimed it again this year. The U.S. Pain Foundation runs a volunteer campaign every year to request proclamations from states, cities and towns.
Several of those started with somebody writing to ask.
A state resolution or a proclamation costs a legislator very little, and it is exactly the kind of request a district office knows how to process. You do not need an organization behind you to make it.
But you have to ask early. A letter arriving in September is a letter about next September.
Put it in your calendar for April.
If you only do one
Do the first one.
The other three ask you to apply, or to wait, or to remember something in seven months. The NIH comment asks for a paragraph about something you already know, on a form you can fill out anonymously in the time it takes to drink a coffee.
It is also the only one with a date on it.
A comment on a draft policy is not a vote. But it is written down, it is counted, and it goes in the file with your words in it.
That is more than most of us got the last time a study we were in came to an end.
NIH. “Request for Information: Draft NIH Policy on Sharing Summary Level Study Results with Clinical Research Participants.” Notice NOT-OD-26-113, released August 27, 2026; responses due October 26, 2026. Source for the draft requirements, the three participant-facing questions, the anonymity provision, and the note that responses may be posted without redaction.
PCORI. “PCORI’s Advisory Panels: Application Review and Selection Process” and “PCORI Advisory Panels FAQs.” Source for the November to March window, the September Board approval, the encouragement to reapply, and the statement that panel meetings are held in hybrid or virtual-only format. The March 7 deadline is from the most recent published cycle and may shift — confirm at the linked page.
PCORI. “Become a Merit Reviewer” and its Merit Reviewer frequently asked questions. Source for the rolling application, the roughly one-week notification, compensation, the in-person requirement with accommodations, and the North America residency limit.
State and local designations are documented in this issue’s Stay Informed piece, “Who Gets a Month?” — see that article’s Sources for the California, Louisiana and Michigan citations.
Note on verification: every date and condition above was checked against the primary source on August 30, 2026, and the NIH deadline was checked again on September 25, 2026. Deadlines move. Confirm at the linked page before you rely on any of them, and write to the editor if you find one that has changed.
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.
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