This issue is called Awareness Isn’t Action.

So here is the part where awareness has somewhere to go.

Three openings. Each one is real, each one is open to a person who has never done any of this before, and each one is described below with what it actually asks of you — not the recruitment version.

1. Tell NIH what you want to hear after a study ends

Deadline: October 26, 2026. Anonymous is allowed.

The companion piece in this issue is about the one ENGAGE recommendation NIH built a public process around: telling participants what the study found. Two days before this issue went into layout, that process moved.

On August 27, 2026, NIH released the draft policy itself and opened a formal request for information on it. The draft 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, unless an exception is approved. Failure to comply could affect an institution’s funding.

Read the requirements section and you will notice something. NIH is not only asking researchers how to do this. It is asking participants what they want.

Three of the questions are addressed to us directly. 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. I have been in studies where the results arrived years later by accident, and I have opinions about all three.

The form takes as long as you want it to take. A paragraph is a comment. Comments may be submitted 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. Become a PCORI Merit Reviewer

Open year-round. You hear back in about a week.

PCORI seats people with lived experience on the panels that score research applications, with weight equal to the scientists in the room. Reviewers are trained. The work is compensated.

Two things the recruitment page will tell you if you read far enough, and that you should know before you apply. The panel meeting is in person, 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 →

3. Put a PCORI advisory panel on your calendar

Not open today. Opens in November.

PCORI’s advisory panels shape funding priorities and engagement standards. Applications are accepted between November and March, and the Board approves new panelists at its public meeting the following September.

So this one is not something you can act on the week you read it. It is here because the window is easy to miss and the lead time is long. Put it in your calendar now for November, and it will find you.

See which panels are opening →

If you only do one

Do the first one.

The other two ask you to apply, and then wait, and then serve. The NIH comment asks for a paragraph about something you already know, from 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 seat at the table is not the same as a vote. A comment on a draft policy is not a vote either. 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.

— Tom