SCONe

Data Privacy Statement

A statement of our commitment to upholding the highest levels of data privacy.

SCONe’s aim is to collect, classify and curate a community-acquired retinal image repository in Scotland. The benefits will include advancing biomedical research into ocular 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. 

SCONe is committed to upholding the highest levels of data privacy, following strict data governance protocols to ensure all data is collected, transferred and stored 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 (PBPP), including authorisation for the use of unconsented healthcare data for research, October 2021 (Ref: 1920-0121 Tochel)

  • Data Sharing Agreements with Data Controllers in participating optometric practices 

  • SCONe meets the five requirements of the eDRIS National Safe Haven generic ethical approval

The SCONe research resource will consist of anonymised retinal images gathered from community optometric practices linked to pseudonymised routinely collected healthcare data (SMR01 and GOS1). The SCONe research resource will reside within the eDRIS National Safe Haven, facilitated by Public Health Scotland. 

Any research conducted using the SCONe research resource will only occur within the eDRIS National Safe Haven. SCONe will never sell data and individual-level data will never be transferred outwith the eDRIS National Safe Haven. SCONe is committed to upholding the highest levels of data governance at all times.