Kidney transplant workup · Ontario, Canada
One workup. Every step in sight.
NephroLink is coordination software for renal programs. It gives Coordinators and Referring Doctors one view of which steps of a patient's transplant workup are done, due, or about to expire, and gives the patient a clear view of what's next.
Records that a test happened and when. Never the result.
The product
A patient app, a Coordinator dashboard, and a view for everyone on the file.
All of them update live from the same record. Version one is built.
For Coordinators
Today, in the order that moves files along.
Start here puts patients who are nearly ready to send first, then transplant-centre requests by deadline, then results about to expire. Results to pull are grouped by where to find them.
Start here
Results to pull
This quarter
For patients
Where am I?
The current step, the next thing to do and the Coordinator's name, in plain language. Patients without a smartphone get the same updates by email or text.
Hi Marie · Step 2 of 5
Tests and consults
What's next
Dental check-up to renewCounts until 6 Nov. Your Coordinator, Sarah, will help you book it.Sees that a package was sent, with the workup status and dates, and replies with requests the Coordinator can act on.
Read-only status for their patient, and a thread with the Coordinator.
Knows which bloodwork to draw at the next session, and when.
Hand in-flight patients to a colleague before leave, history attached.
The workup today
A long chain of tests, referrals and appointments. Across several hospitals.
Before anyone can be listed for a kidney transplant, they finish every link in it. Each step is a handoff, held together by email, fax and memory.
46.1%
died during follow-up. 11.8% received a transplant.
In one Ontario cohort of 23,022 people who started dialysis between 2003 and 2013, over a median follow-up of 2.4 years. Each dot is 1% of the cohort.
This describes everyone starting dialysis, not the effect of workup delays. It shows what is at stake on the path to transplant.
Naylor et al., Am J Transplant, 201727 + 6
Ontario has 27 regional renal programs and 6 adult kidney transplant centres. One workup can touch several of them.
Ontario Renal Network; Auditor General of Ontario, 2021~$8,000
In 2019, Ontario's Auditor General found it costs about $8,000 a year per wait-listed patient to keep their workup current.
Auditor General of Ontario, 2019 Annual Report, s.3.03What we heard
Themes from discovery interviews with Transplant Coordinators and patients.
- Patients often can't tell where they are in the workup, or who their Coordinator is.
- Results expire while other steps wait, so tests get repeated.
- Packages are still assembled and sent largely by hand between hospitals.
- Cover during leave and holidays is where things fall through.
How it works
Five states for every step. Status only, never content.
Each requirement is tracked the same way, with a date on every change. That's enough to see what's moving, what's stuck and what's about to lapse.
- 1Not started
On this patient's workup list.
- 2Ordered
Requested. NephroLink notes who and when.
- 3Booked
There's a date. The patient gets a reminder by app, email or text.
- 4Completed
The appointment happened. The report still has to come back.
- 5Result received
Filed with a valid-until date. The result stays in the hospital record.
See a lapse coming before the package goes out.
Valid-until dates sit on one timeline, so a Coordinator sees a lapse coming while there's still time to rebook.
Privacy and deployment
It tracks the workup. The clinical record stays put.
NephroLink is designed as non-clinical coordination software. It never reads, stores or interprets a test result. Read the privacy notice.
- Planned Canadian hosting
Planned on Microsoft Azure in the Canada East region (Montreal), so data stays in Canada.
- Role-based access, full audit trail
Each person sees only the patients they're assigned to, and access is logged.
- Access rules tested
Automated and adversarial tests check that each role sees only what it should. All testing uses synthetic data; no real patient information has been used.
- Ontario Renal Network reporting
Builds the quarterly report from the day's work.
In a first deployment
Who keeps it up to date?
The Coordinator, in one place, instead of across spreadsheets, email and fax. Everyone else reads from that record.
- Coordinators
- Add a patient and assign them once. After that, the routine task is updating each step's state and date as things happen. NephroLink flags results that will lapse before the planned send date.
- Patients, Referring Doctors, Dialysis Units
- See the same record update live. Nothing extra to enter.
- Results
- Stay in the hospital record. NephroLink keeps that a test happened, when, and how long it counts.
- Referral package
- NephroLink records that it was sent, to which centre and when, and shares the workup status and dates with that centre. Their requests come back as items to act on. In a first deployment the documents go the way the program sends them today, such as fax or secure email; NephroLink tracks the package, not the documents. Whether documents can travel through NephroLink is decided when a hospital connects.
- Hospital systems
- Connected to Epic's FHIR sandbox on synthetic records only. Until a hospital connection is approved, the Coordinator enters updates by hand.
Where we are
Ready for a first renal program partner. No pilot yet.
We're building NephroLink in Ontario and talking to people across the transplant community.
Patient app, Coordinator dashboard, and views for the Transplant Centre, Referring Doctor and Dialysis Unit.
Interviews with two Transplant Coordinators and three patients shaped the Coordinator's day.
An Ontario nephrologist is advising us.
We're looking for a renal program to shape the first deployment with us.
For renal programs and transplant teams
See the whole workup in 20 minutes.
A walkthrough on synthetic data: the Coordinator's day, the patient's view and the expiry check before a package goes out. Then we listen to how your program works today.
Write to us
Email us to book a walkthroughOr copy the address:
hello@ruyanephrolink.caPlease don't send patient information by email.