Data Privacy Statement

The aim of the SCONe project is to collect, classify and curate a community-acquired retinal image repository in Scotland. Research using this resource has a range of potential benefits to society including advancing biomedical research into ocular, neurodegenerative and systemic disease, gathering information on how the retina changes over time, supporting community optometry in clinical decision making, improving triage prioritisation and clinical outcomes, and providing educational resources. 

The SCONe team is committed to upholding the highest levels of data privacy, following strict data governance protocols to ensure all data is collected, transferred, stored and used in a secure manner. 

Data governance protocols undertaken: 

• Co-sponsorship by University of Edinburgh and NHS Lothian, following review by ACCORD 
• Data Privacy Impact Assessment (DPIA) approved by the University of Edinburgh Data Protection Officer 
• Approval from NHS Scotland's Public Benefit Privacy Panel for Health & Social Care (PBPP), including authorisation for the use of unconsented healthcare data for research in October 2021 (Ref: 1920-0121 Tochel) for the initial two-year Proof of Concept phase of SCONe and in August and November 2023 for the current second phase (Refs: 2223-0189 Tochel and 2324-0029 Tochel)
• Data Sharing Agreements with Data Controllers in participating optometric practices 
• Ethical approval after demonstrating that the project meets the five requirements of the Public Health Scotland National Safe Haven generic ethical approval 

The SCONe retinal image repository exists inside the Public Health Scotland National Safe Haven, and consists of images linked to other useful data.

Community-acquired images

• SCONe-collected anonymised retinal images 
• associated metadata e.g. date of capture, eye imaged, resolution 
• derived image feature data e.g. measures of optic disc area and blood vessels

Inside the safe haven the images can be linked to a range of pseudonymised routinely collected healthcare datasets. The current SCONe phase 2 research workspace includes the following:

• Community / primary care
  • General Ophthalmic Services (GOS1)
  • Prescribing (Prescribing Information System)
• Hospital / secondary care
  • General Acute Inpatient and Day Case (SMR01) 
  • Outpatient Appointments and Attendances (SMR00)
• National registry
  • Death (National Records Scotland)

Any research conducted using the repository will only occur within the Public Health Scotland National Safe Haven. The SCONe data will never be sold and individual-level or any disclosive data will not be transferred outwith the Safe Haven. 

We aim to support valuable, robust and meaningful research using the SCONe retinal image repository and are working with Public Health Scotland to facilitate a suitable access and funding mechanism which will allow us to maintain and develop the repository in a secure, sustainable and appropriate way. Patients and the public will be involved in this process.