General
Exploring a new tool for Transplant waitlist transparency and coordination
Hi everyone,
I wanted to share a project I’ve been working on and, more importantly, invite perspectives from people who are closest to the transplant experience.
The project is called TransTrack. It’s an open source transplant waitlist management program designed to explore how transplant centers track waitlist status changes, readiness, and operational workflows over time. It does not make allocation decisions and it is not a replacement for UNOS or OPTN systems. Instead, it focuses on the operational side of transplantation that often happens behind the scenes.
The motivation for building this came from seeing how complex, manual, and sometimes opaque waitlist coordination can be, and how that complexity can indirectly affect patients, donors, and families. The goal is transparency, better understanding of workflows, and eventually better communication and coordination.
I’m sharing this here because people in this community often experience the impact of system complexity firsthand, whether as recipients, living donors, family members, or advocates. While this is a technical project, the intent is very human focused.
If you are curious, the project is publicly available on GitHub here:
https://github.com/NeuroKoder3/TransTrackMedical-TransTrack.git
You absolutely do not need to look at the code to participate. I would especially appreciate thoughts on questions like:
- Where did the waitlist process feel confusing or unclear?
- Were status changes explained well, or did they feel sudden or opaque?
- Are there parts of the transplant journey where better visibility or communication could have helped?
I’m not here to sell anything, and I’m very aware that no software replaces people, compassion, or good medical care. This is about learning, listening, and hopefully contributing something useful back to the community.
Thank you for taking the time to read, and thank you to everyone here who shares their experiences to help others navigate transplantation.
1 - 4 of 4 Replies
Hi Littles83,
do your questions address people from the US only or worldwide?
Best regards
Gesine
@Littles83 I am a kidney transplant recipient but I was also a renal social worker working in outpatient dialysis in Pennsylvania.
One of my responsibilities was to keep track of where my patients were listed. And assist my patients when they ran into issues with their listing.
So one of the things I think that would be useful in your tool would be to show if the patient has any pending issues or is on Hold and why and what they are (i.e additional tests needed or insurance issues or changes, issues the team may feel are problematic such as transportation after surgery or a partner, etc.). Although these things are not clinically significant that can assist the patient and their care team (family, or social worker) from getting better information so they can help the patient remain on the waiting list.
That’s a great point, and I actually think we’re very aligned.
The Operational Risk Intelligence feature is intended to surface exactly those kinds of non-clinical readiness issues, such as pending documentation, expiring evaluations, and administrative gaps that can quietly put someone at risk of being placed on hold.
Where I think your feedback is especially helpful is in making those categories more explicit and human-readable for social workers, patients, and families, so the “why” behind risk is immediately clear. That’s something I’m actively thinking about as the feature evolves.
Hi Gesine!
Many of the underlying challenges being discussed, such as non-clinical barriers, pending requirements, documentation gaps, and psychosocial readiness, are not unique to the U.S. They tend to show up in transplant systems worldwide, even though the specific policies, regulations, and terminology differ by country.
From the perspective of the tool I’m building, the intent is to model operational and readiness workflows in a way that is adaptable. While the current implementation aligns most closely with U.S. practices, especially around regulatory and compliance concepts, the broader ideas around transparency, coordination, and making barriers visible could apply internationally with appropriate localization.
I appreciate you raising the question, because it’s an important distinction to make, and it highlights how much shared learning there can be across different transplant systems.