Find out more about what it means to be part of the SCONe network and how you can help to build a world-leading retinal image research resource. Optometrist FAQs Why should my practice get involved with SCONe? By getting involved with SCONe you are helping to build a world-leading retinal image research resource. The SCONe project will allow for innovation in research, healthcare, and education, and our outputs will benefit optometrists and patients by improving our understanding of how ocular and systemic diseases manifest in the eye. We hope that SCONe’s research will aid optometrists in clinical decision making, improve triage prioritisation, and improve clinical outcomes for patients. What does joining SCONe involve? When a practice joins the SCONe project, the following steps occur: A discussion with the SCONe team about the current systems in use in your practice (e.g. practice management system, image capture devices, etc.) and volume of data being stored. This will most likely occur via email communications or video/phone call. An exploratory site visit to the practice may be required at this stage in some cases. Completion of required governance, such as the practice Data Controller signing a Data Sharing Agreement (DSA) and updating the practice privacy statement to include data sharing with SCONe. Members of the SCONe team perform a site visit to the practice to bulk export retinal images and patient data onto a secure encrypted hard disk. Data from the secure encrypted hard disk is transferred to the National Safe Haven. Once the data is in the National Safe Haven it is then CHI-matched and linked to routinely-collected healthcare data such as the SMR01 and GOS1 data sets etc. The data is then pseudonymised so no personal identifiers are visible. Image Will joining SCONe create extra work for the staff in my practice? The SCONe team will make every effort to reduce any inconvenience to your practice. Practice staff will not be required to perform any data transfer themselves, and so we do not expect that SCONe will add any significant workload to staff.During the practice visit, the SCONe team will require access to a computer which has the practice management system and the image management system on it. To minimise any inconvenience, the visit will be performed at a time which is most suitable for your practice (e.g. in an empty test room on a reduced testing/non-testing day). The length of the visit will depend on the volume of data to be transferred (minimum 2 hours). In some instances, where there is a large volume of data, the disk may be left in the practice to continue writing data overnight and be collected the following morning. If your practice is part of a multiple franchise or chain, SCONe will in the first instance attempt data extraction and transfer at a local level from the individual practice. We expect that in the majority of cases local data transfer will be possible without need for input/engagement with the centralised IT infrastructure. However, there may be some cases where local data transfer is not possible in which case, following discussions and relevant approvals, we will engage with the central IT team of the business to facilitate data transfer. Will the data be safe? Data will be stored in the National Safe Haven, a secure storage facility run by Public Health Scotland. Public Health Scotland will control who has access to the data. Only approved researchers from approved research projects will be permitted access to the data. At no point will any personally identifiable data be visible to researchers. SCONe will never sell any data and individual-level data will never be transferred out with the National Safe Haven. Find out more about the National Safe Haven What governance does SCONe follow? SCONe is committed to following the highest standards of governance at all times. Read about our governance protocols within our Data Privacy Statement. Read our Data Privacy Statement Who signs the Data Sharing Agreement? The Data Sharing Agreement (DSA) is a legal agreement between your practice and the study’s co-sponsors (The University of Edinburgh and NHS Lothian) to cover the safe extraction of the data from your practice and processing them into the format required by the National Safe Haven. Although NHS Lothian is a co-sponsor, this does not mean that only practices located in Lothian can take part. We encourage practices from across Scotland to join SCONe.The DSA is signed by the legal team at The University of Edinburgh and NHS Lothian, and by the practice’s Data Controller. For independent practices, the Data Controller is usually the practice owner. For multiple practices, the Data Controller may be someone in Head Office. As the data captured in each practice is owned by the individual practice (and not by the NHS Health Board), a DSA is required for each individual optometry practice wishing to be involved in SCONe. Why should I update my privacy statement? Your practice privacy statement should be updated to allow data sharing with SCONe, as per the PCA(O)2024(04). This is a very import legal aspect just like the signing of the DSA. Your privacy statement may be available on your website or as a hard copy within the practice.An example of wording that may be used within an existing privacy statement is as follows: We may also share information to support research on important health topics with the potential to provide significant public benefit. Such data sharing will never involve the release of personally identifiable data for use by researchers, and we will only agree to share data for this purpose if the projects have appropriate ethical and legal approval, have scientific merit, are well designed and carried out by trusted research organisations. The legal bases for this are GDPR article 9(2)(j) “scientific or historical research purposes or statistical purposes” and 6(1)(e) “the performance of a task carried out in the public interest”.A template for a full optometry privacy statement, which includes a section on data sharing for research, can be found below. Please insert your own practice details into the sections highlighted in yellow. If there is no designated data protection officer, you can insert the name of the data controller or practice manager (whoever would deal with any data-related queries).Generic Optometry Privacy Statement (Download Word Document) Read the PCA(O)2024(04) Will I have to explain SCONe to my patients? The use of non-consented healthcare data for research in Scotland is governed by the Charter for National Safe Havens (2015). SCONe follows all the principles and standards set out by this Charter. SCONe was approved by NHS Scotland’s Public Benefit and Privacy Panel for Health and Social Care in October 2021 (Ref: 1920-0121 Tochel, 27th October 2021). This means that individual patient consent is not required for data transfer to occur. We will provide patient information posters and leaflets which we would encourage you to display in your practice. You will not be required to answer any patient queries directly about SCONe, as we have set up a dedicated email address for patient/public enquiries which you can signpost your patients towards: ask.scone@ed.ac.uk SCONe continues to reach out to the public and spread awareness of the project through traditional media (e.g. newspapers) and social media. SCONe has also established a patient public involvement (PPI) group to input into the project. Is there any precedent for this? SCONe is creating a resource of community-acquired retinal images which will be unique around the world. However, the gathering of medical images for use in research which is for the public benefit is not new in Scotland. SCONe follows many of the same processes and protocols as Scottish Medical Imaging (SMI), which gathers de-identified medical images (e.g. CT scans, MRIs) and stores them in the National Safe Haven for use in approved research. Will I be able to access the images in the National Safe Haven? No. SCONe is primarily a research initiative and the pseudonymised retinal images stored within the National Safe Haven will only be accessible to approved researchers for approved research projects. However, SCONe is in communication with OpenEyes which is in the early stages of developing an electronic patient record system in Scotland, and so by contributing to SCONe you are helping to further our understanding of how retinal images are gathered and stored in optometry practices and how best we might bring these images together into a centralised storage system. Who is supporting SCONe? SCONe is a joint venture between The University of Edinburgh and Glasgow Caledonian University, and is co-sponsored by NHS Lothian. SCONe has the backing of the Scottish Government, including the Cross-Party Group for Visual Impairment and Dr Janet Pooley, Chief Optometric Advisor to the Scottish Government. Scottish Government support for SCONe was set out in PCA(O)2022(07) in December 2022, and again in PCA(O)2024(04) in September 2024. We are grateful for the support of the following organisations: Sight Scotland, The Royal College of Surgeons of Edinburgh, RS Macdonald Charitable Trust, Fight For Sight, NHS Lothian Charity, Chief Scientist Office, Eisai, Gates Ventures, LifeArc, HDR UK, Research Data Scotland, Action Against AMD, EPCC, and Public Health Scotland. Read more about SCONe funders, steering group & collaborators Who can I contact if I have more questions? Email us at scone@ed.ac.uk if you would like to discuss joining SCONe with one of our team. Email us The SCONe Project University of Edinburgh Contact details Email: scone@ed.ac.uk Follow us on LinkedIn Follow us on X (Twitter) Follow us on Facebook Follow us on Instagram Register your interest in participating in SCONe by filling in our simple online form. Register Your Interest Keep up to date with SCONe news and upcoming free CPD events by signing up to our email list. Sign Up to SCONe Emails Optometrist Experiences Morven Campbell Morven Campbell is an optometrist and dispensing optician, and is the co-owner of Iris Blue Optical, one of the first pilot practices to contribute to the SCONe project.The SCONe team have been wonderful to work with, they have worked around our needs as a practice, timing visits to suit us and dealing with all technical aspects… This hasn’t impacted my patient care model in any way, and it hasn’t increased my workload.I would encourage all optometry practices to get involved and take their place as a facilitator to invaluable eyecare research. Andrew King is an optometrist and owner of Andrew King Optician. The SCONe project is very exciting and I am delighted that my practice was able to take part. The data-gathering visit was remarkably brief, pleasant and unobtrusive. The potential benefits of SCONe to patients are enormous and it is terrific that this is taking place in Scotland. I heartily commend the project to other optometric practices. Andrew King This article was published on 2025-01-27
