How to participate

Why we ask

Every card is written by the Compass team and goes through an AI editorial check before it appears. Team review is a separate, later step, and each card says which reviews it has had. Neither is the same as being right for everyone. Guidance changes, links rot, wording that reads clearly to one person reads coldly to another, and the people living with ALS/MND know things the literature has not caught up with.

Corrections, missing nuance, better sources, and practical knowledge from experience all change what gets published. Contributions are also how we find out which questions people actually have, which is what decides what gets written next.

Where to leave it

On the item itself. Every card carries its own controls, and each one sends us the exact place you were reading, the version you saw, and the section it belongs to, so nothing has to be described from memory.

An answer to a question

Open the question on any card. The feedback panel sits beside the answer on a wide screen and below it on a phone. Use this for accuracy, clarity, missing nuance, out-of-date guidance, or wording you would change.

Practical items

Use the feedback control under the Items tab for ordering, safety, missing context, or an item that does not apply everywhere. It sits below the list, under “Your feedback on these suggested items”.

A resource

Use the feedback control under the Resources tab. Tell us which resource: whether it is useful, trustworthy, too technical, too regional, out of date, or whether an important one is missing.

Lived experience

The Lived experience tab on each card is where practical knowledge goes: tips, workarounds, preparation advice, equipment lessons, questions that turned out to matter. You can also comment on tips that are already published there.

The card as a whole

Use Improve this card for anything that is about the card rather than one item: something missing, something in the wrong place, or a question we should be answering and are not.

Something urgent or unsafe

Any of those controls has a safety option under More options. Safety reports go to the front of the queue and stay private to the Curalysis team. Compass is not an emergency or clinical support service.

Not about a specific card? Contact us instead. That reaches the team directly rather than the content queue.

What happens next

1. It reaches moderation. Nothing contributed appears on the site without a person reading it first. Safety reports jump the queue.
2. We may come back to you. If something is unclear we can ask a follow-up question, but only if you left an email. An email address is optional everywhere except publishing lived experience under a name or chosen attribution.
3. Accepted changes become a proposal. Related contributions are grouped into a proposed change to a card, which is compared side by side against the published version.
4. Review, then publication. The team approves the wording; where the topic requires it, a clinician reviews it before it can go live. The card gets a new version, and the change is listed in Updates.
5. Lived experience is confirmed with you. We may shorten, combine or de-identify it. If your name or chosen attribution will appear, we show you the final wording and wait for your approval first.

We read every contribution. How long it takes varies with how complex it is and what kind of review it needs, so we do not promise a turnaround time.

Finding what you have already proposed

Review activity shows everything you have sent, with its current status and outcome. No account is needed: enter the email you used and we send a one-hour link. From there you can also withdraw an item or have your details deleted.

If you have an access link as a reviewer, the review area lists the proposals assigned to you and the comparison view for each one.

Your details and your rights

Your email is never displayed publicly. What you send may be edited and published under the Compass licence; the consent on each form says so before you send it, and the privacy notice explains what we keep. You can ask for your details to be deleted at any time, and deleting erases the text of what you sent rather than only your name against it.