Analysis of retinal scans to leverage with other healthcare data
Data Use Register - full project summary
Project Identifier
NWSDE_2526_0051_PILOT
Project Title
Analysis of retinal scans to leverage with other healthcare data
Lay summary
Data about patients who visit St Paul’s Eye Unit and the Liverpool Diabetic Eye Screening Programme is collected when they come in for their normal eye care. This information is saved in different computer systems at the hospital. The data includes things like notes from the eye doctor, pictures of the eye, and special images used to look for disease.
Before the data is shared for research, it is pseudonymised, which means people’s names and details are removed so no one can tell who they are. The NHS National Data Opt‑Out is also applied, so anyone who has chosen not to share their data for research is not included.
After this, the data is safely moved to a secure computer system called a Secure Data Environment (SDE). This is run by ARO, a UK‑based company that specialises in keeping NHS data safe. Only approved researchers can use this data, and they must work inside the SDE, which is protected behind the NHS firewall. They are only allowed to take out summary results—not any of the patient‑level data.
We have also created strong rules and a clear process for who can use the data, and these rules were developed with help from patients and the public. Our funding plan will keep the service running for the future.
From the start, our goal has been to link hospital eye care data with primary care data for the same patients. We now plan to connect our system to the North West SDE, which will allow us to combine more types of pseudonymised data. The teams from LEDP, ARO, and the North West SDE have discussed two possible ways to connect the systems.
Sending selected pseudonymised data from the LEDP system to the North West SDE so the combined data can be studied there. Exploring whether both systems can safely ask each other questions (called “federated queries”) without moving the data at all.
Before the data is shared for research, it is pseudonymised, which means people’s names and details are removed so no one can tell who they are. The NHS National Data Opt‑Out is also applied, so anyone who has chosen not to share their data for research is not included.
After this, the data is safely moved to a secure computer system called a Secure Data Environment (SDE). This is run by ARO, a UK‑based company that specialises in keeping NHS data safe. Only approved researchers can use this data, and they must work inside the SDE, which is protected behind the NHS firewall. They are only allowed to take out summary results—not any of the patient‑level data.
We have also created strong rules and a clear process for who can use the data, and these rules were developed with help from patients and the public. Our funding plan will keep the service running for the future.
From the start, our goal has been to link hospital eye care data with primary care data for the same patients. We now plan to connect our system to the North West SDE, which will allow us to combine more types of pseudonymised data. The teams from LEDP, ARO, and the North West SDE have discussed two possible ways to connect the systems.
Sending selected pseudonymised data from the LEDP system to the North West SDE so the combined data can be studied there. Exploring whether both systems can safely ask each other questions (called “federated queries”) without moving the data at all.
Public benefit statement
This work will help researchers better understand eye diseases, improve treatments, and support faster, safer care for people across the region and beyond.
Legal Name of contracting organisation
University of Liverpool
Date of countersigned contract
10/08/2025
Health Research Classification System
Eye
Current Project Status
live: Live Data In Use
Multiple SDE
No
Is SDE the lead in this project?
Yes
Name of SDE parties
N/A
Is SDE the lead in this project?
Yes
Further information