Tochel, Claire
Pead, Emma
McTrusty, Alice
Buckmaster, Fiona
MacGillivray, Tom
Tatham, Andrew J.
Strang, Niall C.
Dhillon, Baljean
Bernabeu, Miguel O.
Funding for this research was provided by:
Edinburgh & Lothians Health Foundation
Sight Scotland
Royal College of Surgeons of Edinburgh
Chief Scientist Office
RS Macdonald Charitable Trust
Article History
Received: 24 April 2023
Accepted: 5 January 2024
First Online: 17 January 2024
Declarations
:
: SCONe is covered by the National Safe Haven ethical approval (from the East of Scotland NHS Research Ethics Service), as confirmed in writing by Public Health Scotland before the study commenced. The use of unconsented data within Safe Havens is approved by Scottish Government who set out guidelines for this in their Charter for Safe Havens [CitationRef removed]. The SCONe dataset (community-acquired retinal images linked to centrally-held healthcare data) is pseudonymised within the National Safe Haven, prior to being made available for research. The SCONe dataset is a novel resource which we are creating for the first time from data that were not previously linked. This paper describes part of the process of creating that novel resource. In order to link retinal images from the community to centrally held healthcare data, by definition, identifiable data must be used. The data were managed carefully and kept secure at all times, in accordance with all relevant guidelines and regulations. The study was co-sponsored by University of Edinburgh and NHS Lothian who oversaw the governance underpinning the work and endorsed its protocols. Data Sharing Agreements were set up between the study sponsors and every data controller (community optometrist) who agreed to participate. Approval to work with patient-level healthcare data was provided by the NHS Scotland Public Benefit and Privacy Panel for Health and Social Care (ExternalRef removed). This panel, which reports directly to Scottish Government, is the most senior NHS governance body in Scotland and assesses applications to work with healthcare data within the National Safe Haven.
: Not applicable.
: The authors declare no competing interests.