Data & Insights
Marshall Schoenthal, Industry Principal
October 23, 2026
I spent this week in Philadelphia at the Donate Life America Annual Conference. It was Phase2's first time there as DLA's technology partner for the next-generation National Donate Life Registry, and we went mostly to listen and learn.
We met with organ procurement organizations (OPOs), state registry teams, DMV partners, researchers, and Epic. Almost every conversation came back to trust.
Madison Walter-Garcia, DLA's new President and CEO, made public trust a theme of her first conference. We heard the same thing all week from the people who use the registry every day. People have to trust it when they sign up at the DMV, when a family learns their loved one registered, when a coordinator searches for a record, and when a volunteer asks a stranger to say yes.
Someone signs up in 30 seconds at a DMV counter. Years later, that decision reaches their family on the worst day of their lives. In between, the registry is the keeper of that person's wish to help others. That is a responsibility we take seriously.
Sean Fitzpatrick of New England Donor Services told us what Family Service Coordinators need in that moment. A "yes" isn't enough. They need a Document of Gift that looks official, and a clear record of when, where, and how the person registered.
Shelley Snyder and her team at Donate Life Kentucky showed us why. They told us about a family who doubted a record because it showed a change at 2:42 a.m., while their loved one was in the hospital. The time was when a file had been uploaded, not when he made his choice. One wrong timestamp was enough to make a grieving family doubt what he wanted.
Coordinators search under pressure, usually working from a hospital chart. The chart might say Michelle when the registry says Shelley. A married name might not match a maiden name. A birth date gets read aloud, typed into one system, then typed again into another. The search still has to find the right person. At NEDS, Sean explained, a coordinator has to narrow the results to exactly one person before the Document of Gift unlocks.
Duplicates cause the opposite problem. A name change can split one person into two records, and two people can look like one. The Kentucky team's example was a father and son with the same name, living at the same address, who should never be merged. A matching license number is a safe match. Close calls should go to a person to review. It's careful, unglamorous work, and families depend on it.
Trust also depends on how the registry treats people who change their minds. Taking yourself off should be as easy as signing up, with a confirmation and no guilt.
In Kentucky, Stephanie handles most removal requests by hand. That means upset callers, voicemail tag, after-hours callbacks, and records looked up one at a time. Letting people remove themselves online and get an email confirmation would help them and her.
Ieesha "IJ" Johnson, Executive Director of The Decision Project®, told us what happened when she tried it herself. She signed up, came back later, and couldn't get into her account. "Now in my mind I'm like, am I a donor? Am I not a donor? What did they do with my data? Do I trust them?"
We also heard about small things that quietly cost registrations. Many people who signed up at the DMV have no email on file, and many don't remember which ID number they used. IJ also told us that some of the communities she works with wouldn't register at all when the form asked for the last four digits of a Social Security number.
The state teams and community partners who grow the registry need more than a running total. They want to see which ZIP codes are behind, how often people say yes at each DMV office, and which campaigns worked. Shelley's team runs high school challenges with a sign-up page for each school and a leaderboard. One simple ask from them: let people who are already registered reaffirm their decision and still count for their school.
Small teams can't be everywhere. Good data tells them where to go, often to the communities where trust has to be earned first.
Donors and families are trusting this system with a very personal decision. OPOs and states want to keep ownership of their data, and they expect it to be well protected. What we're building is a secure, cloud-based platform built to federal security standards, connected to DMVs and to partners like Epic, Apple Health, and Walgreens, so people can register in the places they already go.
That's as far as I'll go on the technology. My part is making sure what we build matches how people actually use it, and this week gave us a lot to work with.
Thank you to Heather Butterfield and the DLA team, and to everyone who made time for us. We have a lot of work ahead. The goal is more people saying yes, and every yes being honored.