Community Data · A Conversation We're Starting

They turned the instruments off.

So we're building our own.

The systems that tracked what happens to women in this country are being dismantled in real time. The women's health record can't depend on the institutions that abandoned it. This page is the start of a different idea: a record built with patients, not just about them.

We're flying with the instruments off.

When you can't measure what's happening to women, you can't prove it, fund it, or fix it. Over the last year the public infrastructure that counted maternal outcomes has been quietly taken apart — while the crisis it was built to watch keeps widening.

Not a complaint. Documentation.

  • PRAMS was dismantled in April 2025. The surveillance system that tracked maternal outcomes for thirty years — gone. The data simply stops.CDC · Pregnancy Risk Assessment Monitoring System
  • Black maternal mortality is 3.5× the white rate, and widening. The widening is the part no one is now positioned to measure.CDC, last full surveillance year
  • Care avoidance is rising in enforcement-heavy regions — and maternal outcomes there are getting worse in real time, with fewer and fewer eyes on it.Labora Rounds Intelligence Report 13
That is not an oversight. That is a decision to stop looking.
We are not waiting for them to look again.

A record built with patients.

Community-level data, contributed by the community.

Labora Collective already runs Labora Rounds — a physician-led intelligence platform watching dozens of women's health domains and turning sources into verified signals. It reads the public record. But the public record is going dark.

Community-level data is the missing half: the experiences, outcomes, and patterns that institutions never captured well even when they were trying — and aren't capturing at all now. The contraceptive desert you live in. The appointment you waited six weeks for. The symptom you were told was nothing. One story is an anecdote. Ten thousand stories, structured and consented, is a record.

We're not launching a database today. We're starting the conversation — with patients, clinicians, doulas, and advocates — about how to build one that earns trust. The form below is how you tell us you want to be part of that conversation.

Early thinking, in the open.

Nothing here is final. This is the shape we're exploring, and we want your reaction to it.

1

You contribute

Your experience, in your words — a short structured intake, a voice note, or both. Always voluntary, always yours.

2

We protect

De-identified by default. Consent-first. You decide what's shared, with whom, and you can withdraw it.

3

We build the record

Patterns — deserts, delays, disparities — surfaced alongside Labora Rounds' clinical intelligence.

4

It goes to work

Evidence for the journals, for advocates, for policy — proof that doesn't depend on a system that stopped counting.

The rules, first.

Before we ask for a single data point.

Consent is the product

Nothing is collected without informed, revocable consent. You can see what we hold and ask us to delete it.

Owned, not extracted

Your data is not sold, not handed to advertisers, not used to train a stranger's model. Owned, built, and run by women of color — that includes the data.

De-identified by default

We design to protect identity from the start, not as an afterthought. Aggregate over individual, always.

You see the receipts

What the record shows goes back to the community that built it — not locked behind a paywall or a login you'll never get.

To be clear: this is a conversation, not a live data pipeline. We are not collecting medical records or sensitive health data through this page. Right now we're only gathering interest and ideas from people who want to help shape what a trustworthy community-data effort looks like. Please don't share private health details in the form below.

Join the conversation.

Tell us you want in. We'll bring you into the design process — early listening sessions, draft consent language, and the first pilot when it's ready. No medical information needed or wanted here.

Helps us understand where gaps are. Never required.

What happens next. You'll go on the community-data list. As the work takes shape, we'll invite you to listening sessions and share draft plans for your reaction before anything is built. You can leave the list anytime.

Reminder. This form is for interest and ideas only — it is not a medical intake. Don't enter diagnoses, records, or private health details here.

Questions? Email yconnor@diosara.com. Have a story to tell instead of data to share? Submit it here.